Medicare & Parkinson’s: Your Frequently Asked Questions

Adolfo Diaz 00:00:01
Welcome everyone to the Parkinson's Foundation and AARP joint webinar series. Today's topic is Medicare and Parkinson's: Answering Your Frequently Asked Questions. Hello all. My name is Adolfo Diaz. I'll be your moderator for today, and I am the associate vice president of information and resources at the Parkinson's Foundation. And in that capacity, I oversee our helpline, our 1-800-4-PD-INFO. I also have a background in physical therapy and have worked in both the hospital and home health settings, including treating persons living with Parkinson's disease.

For those of you who are tuning in for the very first time, we're so very glad to have you here. This AARP and Parkinson's Foundation partnership helps to reach even more people with Parkinson's and their care partners to provide the tools, information, resources and the community that they need to live better with Parkinson's disease. Last June, we hosted our first webinar in this Medicare and Parkinson's series. And in that webinar, we addressed general Medicare and coverage issues on a more broad basis, looking at some of the more general questions that people are faced with.

When we designed this second webinar, we intentionally focused on many of the unanswered questions from that first webinar, many of them which got into more specifics about certain coverage areas with Medicare. We know we will not be able to address all of the frequently asked questions today, but we will be focusing again on some specific areas as well as looking at long-term care issues in the second portion.

If there are other Medicare and Parkinson's topics that you would like to see us address in more detail in the future, please make sure you include those in our post-webinar evaluation. Before we get started, there's a few webinar tools and features we want to point out. The question and answer icon is located at the bottom of your screen. Take a minute just to see it take a look and see where you can find that so that you can post your questions during the program.

This is where you'll be able to message us if you have any technical difficulties, and we will try to answer as many questions as we can towards the end of the program. And if you open your chat box right now, you'll find a link to download the slides to today's webinar. This webinar is being recorded and will be available on demand within 48 hours. Don't worry about trying to take notes or things like that. We just encourage you to listen to our wonderful speakers.

All those registered will automatically receive an email notice with the link and it'll of course be available on the Parkinson's Foundation website at Parkinson.org. AARP FAQ as in frequently asked questions. AARP FAQ. Again, we'll be providing you those links so don't worry if you did not capture those. Before we begin, we'd like to take a moment to get to know our participants just a little bit better. If you'll notice the poll that should have popped up on your screen now, we'd like to know what best describes your connection to Parkinson's disease. You can just click on the box.

It will just take a couple of minutes. Let that fill in.

Adolfo Diaz 00:03:38
It looks like about sixty-six percent of those joining us today are people living with Parkinson's disease, and the other thirty percent are spouses or partners. We also have some healthcare professionals, and we certainly welcome you, as well as other members joining us today. As we get started, it is my great pleasure to welcome our very first speaker, Jessica Shurer. Jessica is the director of patient and care partner advocacy at CurePSP.

Previously, Jessica worked as a clinical social worker at the Movement Disorder Center at the University of North Carolina at Chapel Hill, a Parkinson's Foundation Center of Excellence. As a clinical social worker, Jessica provided psychosocial support and connection to resources for patients and families living with Parkinson's disease as well as atypical Parkinsonism diagnoses. Jessica will be speaking today about Medicare coverage for Parkinson's-related services specifically. Welcome Jessica.

Jessica Shurer 00:04:51
Thanks, Adolfo, and thanks to the Parkinson's Foundation and AARP. It is my pleasure to be with you all today. As Adolfo shared, I was the center coordinator of a Parkinson's Foundation Center of Excellence for over nine years, but as of two and a half weeks ago, I started a new position at CurePSP, which serves folks with progressive supranuclear palsy, corticobasal degeneration, and multiple system atrophy. But I still hope to be involved in the Parkinson's community in many ways and hold such a special place in my heart. In complete transparency, I will let y'all know I was sick last week.

Then I had laryngitis, so if I sound a little bit froggy still, I apologize. But I'm here to talk to you about some of the frequently asked questions that we get in our centers around Parkinson's and coverage under Medicare. I do want to say this is really the tip of the iceberg with all of this. There are definitely more frequently asked questions than what I'm able to cover here. But for the purpose of this webinar, I'm mainly focusing on therapies and outpatient services. Also, insurance policies change all of the time.

This is especially the case with the guidelines that the Centers for Medicare & Medicaid Services, or CMS have put into place during COVID. I am answering these FAQs to the best of my ability, knowing that they can change and knowing that they can be very individual as well. And I also really highly encourage you to watch the previous Parkinson's Foundation and AARP webinar from this past June, where my social work colleague Lance Wilson and another representative from AARP did a fantastic job at breaking down the basics of Medicare in a really understandable way.

That's archived on the Parkinson's Foundation online resource library if you, hadn't gotten to watch that back in June. I do want to start with a poll just to understand a little bit more about who I'm speaking with today. For the people who are watching who have Parkinson's disease or if you're a care partner of someone with Parkinson's, what is the Medicare coverage of the person with Parkinson's? Do you have Original Medicare, a Medicare Advantage plan, do you not know what plan you have, or you don't have a Medicare plan? I will give you a couple seconds to answer that. Great.

It looks like the majority of people who are with us today do have Original Medicare, although many people have a Medicare Advantage plan as well. And then a handful of people don't know what plan you have, which might be a helpful thing just to look into and to know your coverage. For those who don't have Medicare, some of this might not necessarily apply right now, but you might have Medicare down the road. It's definitely really helpful and I'm glad that you're here to think ahead with that.

Jessica Shurer 00:08:23
As the world's quickest summary, Original Medicare is A and B. It's fee-for-service. A is for hospital coverage, B is for medical coverage, which usually covers outpatient services. Medicare Advantage plans fall under Part C. They're managed by private insurance companies that have been approved by Medicare, and they basically bundle your Medicare coverage, sometimes adding additional benefits into that. Most healthcare providers take Original Medicare. Medicare Advantage plans can be limited by service area or providers listed as in-network under your plan.

Both Original Medicare and Medicare Advantage plans cover rehabilitation therapies, and that's what I wanted to talk about first and actually with a lot of these slides. A really common question we get is does Medicare cover rehab therapies? And that's because physical, occupational, and speech therapy are extremely important parts of multidisciplinary care to support people living with Parkinson's.

It's something that we definitely encourage participating in and being assessed around early on in the diagnosis and then continuing to check in on over the course of living with Parkinson's disease and adjusting those therapy plans as new symptoms or new needs arise. Again, both Original Medicare and Medicare Advantage cover rehabilitation therapies. For Original Medicare, Part B covers 80% of outpatient rehab therapies.

You're responsible for the remaining 20% of the cost after meeting the Part B deductible, but many people usually buy into a supplemental plan and that may cover all or part of that remaining 20%. It just depends on your supplemental plan. For a Medicare Advantage plan, the cost and coverage, and this is sort of a running theme you'll see today, depend on the specific plan you have. That includes if a provider is in-network under your plan or if you have a deductible in your plan that you need to meet in order for it to be fully covered.

For home health rehabilitation, Medicare usually pays for the full cost of home health care for up to 60 days at a time, but someone must qualify for home health and I'll get into that a little bit more later. For rehabilitation therapy, no matter what kind of rehabilitation therapy you're doing, insurance coverage through both Original Medicare and Medicare Advantage plans is based on medical necessity. Which leads me to my next slide and frequently asked question. This is an extremely common question that we get.

In fact, we got this a whole bunch even in preparation for this presentation is, is there a cap to rehab therapies? The short answer is no, but that's just the short answer. The reason we get this question a lot is because in the past, there was a threshold with how much Medicare could be billed for physical, occupational, and speech therapy within a year.

Jessica Shurer 00:12:15
But in 2018, Medicare did away with the annual cap for rehab therapy if there's medical necessity. But the medical necessity thing is where it gets kind of tricky because the guidelines around it are kind of vague and can still be up to each therapist or each therapy agency to determine if it's something they're able and willing to do. With Parkinson's disease and atypical Parkinsonism diagnoses for that matter, it can usually be argued that there is medical necessity because symptoms change over time, rehab therapy helps with maintenance. It helps with prevention of safety complications.

However, typically, in therapy, there still comes a point when someone hits a new baseline in their functioning or kind of plateaus with what the therapy is addressing. They hit this plateau where they're usually not really making new gains from working with that rehab therapist. Sometimes we have patients, oftentimes we have patients who hit that point in their therapy and then ask their rehab therapist if they can still keep coming back to therapy to do their exercises with them, because people do really well when they're in rehab.

Once they're discharged from rehab, they may stop participating in the exercises so much because they're not having that one-on-one prompting and monitoring during that and kind of that motivation to do it. But the truth is that it's usually not the purpose so much or the best use of rehab therapist's time to just be there to prompt and monitor exercise if there's really nothing new that they can address during it. But more importantly, a big goal of therapies is to teach you how to take the exercises and strategies that they taught you for you to be able to apply them at home and continue using them at home.

And this really goes for both outpatient and home health rehab therapies. For insurance coverage and for what they're able to contribute to, they usually want to be able to show that they're helping you make new gains in some way. That being said, I have had a handful of patients with Parkinson's over the years who are able to figure out how to do continuous, like ongoing or long-term therapy that is covered by their insurance.

However, I have found that these are often through private rehab organizations. This is because rehab organizations that are part of larger hospital systems often have a higher volume of patients. They're often rehabbing more acute issues like after someone has had a major fall or a stroke or a traumatic brain injury. Oftentimes if they're part of a hospital, they're associated with a neurology center or a movement disorder center. They're seeing a lot of Parkinson's patients and because of all this, it's usually just not feasible for them to do ongoing therapy with all or even some of their patients.

Jessica Shurer 00:15:40
You can always file a claim to Medicare to see if they'll cover it, but again, usually someone still needs to be showing some gains from that therapy. I hope that makes sense. If someone just recently did therapy and then asks their provider if they can do it again, usually we want to understand a little bit more about why, like what exactly they're wanting to address that wasn't addressed before or something's changed. Oftentimes we'll say that if the doctor is comfortable referring them, they can go through an evaluation with the rehab therapist.

Then it's kind of up to that rehab therapist or that outpatient or home health rehab organization to decide if they find medical necessity and argue that when they bill insurance. Your provider must notify you before providing care that is not medically necessary so that you can decide whether or not you want the services and potentially pay for them out of pocket. But again, ultimately it's sort of up to the agency or the therapist to agree to continue therapy with you. That is the long answer, but also a short answer to that question. I do want to share a real-life example of this.

When I was at UNC, we had a patient who I will call Mr. X. He has had Parkinson's for 16 years, so living with it for quite some time. In the past, he'd undergone deep brain stimulation surgery, and in the past few years he has had multiple larger falls, some of them resulting in hospitalizations where he then went to subacute rehab and then was discharged home either with home health or outpatient rehab therapies after that. He does live at home with his wife.

His daughter lives not that far away and just in this past year they finally hired some professional caregivers to give his wife a little bit of respite with her care and to help actually prompt some exercise with him. He kept coming through our outpatient rehab. He did very well there every time, and every time he'd be discharged, he'd kind of decline a little bit because he had a lot of difficulty with doing the exercises at home. And this was in part because of organizational challenges.

He needed someone with him when he was exercising because of falls risk, and he needed some motivation to do them to do it on his own. So our rehab team when I was at UNC was really trying to stress the importance of figuring out ways to maintain doing the exercises they had taught him at home. And eventually what we did was refer him to what's called in-home outpatient rehab agency in our area, and I'll get into that a little bit more. They have been able to continue doing physical therapy with him one to two times a week ongoing with insurance covering it.

And what he's doing now is coming back to our Parkinson's specialized outpatient rehabilitation about every six months for a reevaluation to see where he is and how to adjust the therapy plan. This is just one case example. I do want to highlight that the truth is many people with Parkinson's don't necessarily need that ongoing rehabilitation therapy.

Jessica Shurer 00:19:24
The large majority of people with Parkinson's actually do perfectly fine doing a therapy evaluation every six to twelve months, with therapy after that when necessary or needed, and then keeping up with exercises at home and online and group exercises all for maintenance in between. The next question is, does Medicare cover rehab therapy in the home? As I mentioned, some people will qualify for home health rehabilitation. In order to qualify, you must be considered “homebound.” This doesn't mean, and this is a big misconception, that that you are not allowed or able to leave your house ever.

It just means that it takes considerable taxing effort to leave your house and that usually requires special assistance from a person or an assistive device in order to do so. This is usually a really good option for folks who had been doing outpatient rehab, but it's just so much effort to leave the house, to get in the car, to travel there, and then come back, and it is kind of more effort than it's worth, and then we'll consider bringing in home health rehab instead.

In order to qualify for home health as well, you have to be certified by your provider, your referring provider, as being in need of intermittent physical, occupational, or speech therapy and/or skilled nursing services. They do this by completing a document called a face-to-face encounter, usually within a certain time frame of being referred to home health.

So it's where they're saying this person would qualify for home health and then home health comes out, does their own evaluation to say yes, in fact, this person would qualify as being appropriate and homebound. To make things a little bit more confusing with this, we have seen a growth, especially in recent years, of agencies that provide, and I mentioned this earlier, in-home outpatient therapy. This is rehab that is done in your home, but it's billed as outpatient.

Occasionally we'll see this through hospitals, like when I was at UNC, we saw this a little bit where our OTs were allowed to go to someone's house for a home safety evaluation within, I believe it was a 30-mile or 30-minute, don't quote me on that, radius of the hospital. We also had another division of allied health services where OTs could go in the home and do in-home outpatient, but I've definitely found that not every hospital is able to offer that. Usually they're actually private in-home outpatient rehab agencies.

If you've been discharged from outpatient rehab or it's just too difficult for you to get there for whatever reason, but maybe you wouldn't or don't qualify for home health rehab, or you're kind of the case of that gentleman that I shared with you who really wanted to do a little bit more specialized therapy ongoing and this agency was able to do that in between outpatient therapy. You can ask your physical or occupational therapist or your neurologist or, if you have a social worker at your clinic, ask if they are aware of any local in-home outpatient rehab agencies.

Jessica Shurer 00:23:12
Something I'll just mention here too that I'm really not getting into so much in this presentation, but this is kind of where it comes up: you may be working with a physical or occupational therapist and they might recommend that you obtain and start using an assistive device like a cane or a walker or a wheelchair in order to help with ambulation and help with safety. I do want to mention that, under Original Medicare, you typically pay 20% of the Medicare-approved amount for that assistive device after you pay your Part B deductible for the year.

And I also want to mention, and Lance really talked about this more in the previous webinar, definitely check that out. But there is sort of this five-year period after your insurance, after Medicare has covered an assistive device. Let's say you, and Medicare also don't really go backwards in terms of the needs with it.

Let's say you never used your Medicare benefit for a walker, but you go ahead and use it for a wheelchair, and then you decide, hey, I also need a walker. They might not cover the walker because there's this thought of like why would you need a walker if you have a wheelchair and that's kind of like going backwards with your ambulation needs.

Or if, say, you used your Medicare benefit to get a rolling walker and then you're evaluated by a PT and they say you actually do a lot better using a U-Step walker, insurance likely would not cover your U-Step walker because you had just used it to get a different walker. It really needs to show medical necessity. You can argue it with your insurance. Occasionally it kind of works, but usually you need, again, emphasizing medical necessity. There's that timeframe with it, and also it, if if your piece of equipment is damaged beyond repair, then that can also help with, coverage of it.

A question I get a lot too is how do I go about finding physical, occupational, or speech therapy? this is really important that we emphasize with folks with Parkinson's because research is time and again finding that people who work with providers who have specialized knowledge and training in Parkinson's disease often has the highest quality of care and outcomes.

A lot of times we'll have folks be referred to physical therapy and it didn't really help them so much. Then we find out that the therapist was a general PT or they were really specialized in sports rehabilitation rather than neuro or Parkinson's disease. Some specializations or certifications that they can go through that you can look for are LSVT BIG, which is for physical and occupational therapy; LSVT LOUD for speech therapy, Parkinson Wellness Recovery, or PWR!; SPEAK OUT! is another voice therapy, and also the Parkinson's Foundation's Team trainings.

So those are definitely things worth looking into and you could ask your neurologist. You could ask your social worker at your clinic to connect you to one in your area. If there is not a Parkinson's-trained person in your area, look for someone who's at least specialized in things like neurology, balance or geriatrics.

Jessica Shurer 00:26:57
For home health, there is actually a website you can visit, which is medicare.gov/care-compare, or you could just literally do a web search for Medicare Home Health Compare, where you can pull up home health providers in your area and search by quality of care ratings and who's on their team. And like I mentioned for in-home outpatient, usually you can do an internet search for this or you can ask your care team if they know of anyone in your area. For all of them, ask your neurologist, ask your social worker who they know who is Parkinson's-trained in your area.

You can also ask your friends or family or your Parkinson's support group who they have had positive experiences with. And, of course, ask if they take your insurance. And they might have a financial counselor on staff who can look at your insurance plan and tell you the estimated out-of-pocket costs. Before initiating services, they're supposed to share with you how much Medicare will pay. And then I also just want to say a quick note about telehealth because this is coming up a lot. Because of COVID, we've seen a growth of access to care through telehealth.

This is especially helpful for folks in areas where there's not a lot of rehab options or perhaps no one specialized in Parkinson's. Again, there have been waivers put into place by CMS that have lifted restrictions on coverage of telehealth services because of COVID, and these waivers have been extended multiple times.

Still, I have found that it's pretty dependent on the rehab organization, the rehab therapist, and your specific symptom and symptoms and safety needs. For example, I've had a number of folks with Parkinson's who've done their speech therapy evaluation in person and then were able to successfully do all their follow-up appointments via video visit. Telehealth has also been a great option for occupational therapists to look at your home space without coming into it. But there are many times when telehealth rehab isn't the best option for folks.

So maybe if they're a little bit more advanced in the disease, might be more of a falls risk or have some cognitive challenges and really need more of that face-to-face one-on-one assistance. It's definitely if it's something you're interested in, it's worth asking the therapist or the rehab agency if they offer telehealth therapy and if you would be, if it would be appropriate to meet your therapy needs. Does Medicare cover exercise or wellness programs? Most of the time, no. There are some specialty health condition-specific programs that insurance can cover, like cardiac rehabilitation, for example.

But for Parkinson's, most of the time people are really thinking more about their local Rock Steady boxing classes or dance or yoga or Pilates for Parkinson's or maybe gym memberships or personal trainers. And those really aren't covered by Medicare.

Jessica Shurer 00:30:13
Medicare Advantage plans have the potential to offer extra benefits that might include exercise or wellness programs. It's not required, though, and so it kind of just depends on your plan. Some supplemental plans to Original Medicare might cover this as well. SilverSneakers is the most common and popular exercise class that is covered by Medicare, or a program that is covered by Medicare. It's offered through specific gyms, although I think that they're doing online exercise classes as well, and you can find that at SilverSneakers.com.

Jessica Shurer 00:30:51
There's also another one called Silver&Fit. Both of those websites have areas where you can search if you're covered through your plan or if it's available in a gym in your area. I have occasionally had patients who will receive flyers or emails directly from their insurance, like a Medicare Advantage plan, about their own exercise class that they're offering online. Recently, when I was still at UNC, a woman got a flyer from her Medicare Advantage plan on a falls prevention class, and our physical therapist said, "Sure, if you can do it with someone else and make sure that you're safe while doing it, and if you like it, then go for it. It's free. It's covered by your insurance."

What about coverage of in-home care? This is one of the most common questions I get from patients and families. Unfortunately, it's also one of the most common misconceptions around insurance. Home health and home care are often used interchangeably, but they are different. Sometimes professional caregivers or aides will be referred to as nurses when they're not actually providing nursing services. There's a lot of confusion around these terms. Usually, when people ask about this, they're really thinking of home care.

Someone, a professional caregiver, comes in and provides some companionship and activity engagement, meal preparation, light household tasks, medication reminders, maybe some personal care, and caregiver respite for the family. But again, home health, as it is under insurance, is really the skilled nursing services, the rehab services, and it's really meant to be temporary and intermittent.

While you're receiving home health, you might qualify to have a certified nursing assistant come in to give a bath or help you get dressed. Usually it's only about an hour, it might be two to three times a week, and it's temporary while under home health. It ends when your home health ends.

Do be aware that when you call your insurance and ask if they'll cover home care, I have found that it's not uncommon for folks who staff these calls to not fully understand the differences between the two. They might say yes, they do, when in fact they're saying that they cover home health and you're asking about home care.

Does Medicare cover mental health therapy? Yes, usually it does. Original Medicare covers mental health therapy at 80% of the Medicare-approved amount. This means that as long as you're receiving services from a participating provider, you'll usually pay 20% coinsurance after you meet your Part B deductible. But I do want to highlight that just because Medicare covers therapy, it doesn't mean that all therapists take Medicare. It's definitely something to ask when you're researching therapists. A good website for this is Psychology Today.

On that website, you're able to search for therapists in your area, and you can actually specifically search for who takes Medicare and different specializations, like chronic illness or different age categories.

If you're enrolled in a Medicare Advantage plan, you should contact your plan, whether looking on their website or calling them, to better understand the costs and coverage for mental health services under your plan. They might have deductibles under your plan, or co-payments or coinsurance that apply, and you'll need to find a provider that's listed as in-network under your plan. Sometimes it can be hard to find folks who are specialized in Parkinson's disease. That's pretty rare, actually.

Usually, we recommend looking for people who specialize in things like anxiety, depression, coping with chronic illness, new medical diagnoses, grief, aging and caregiving. A lot of people will ask if cognitive behavioral therapy is covered under Medicare, and it is. It's just one type of therapy modality that therapists can use. There are many different ones, with CBT being a very popular one. The coverage is really about the therapy itself, not about what therapeutic approach they're taking.

I'll mention telehealth therapy as well. That kind of depends on the therapist that you're working with. Again, waivers put into place during the pandemic do allow for Medicare coverage of telehealth therapy, but who takes this kind of varies, mental health agency by agency and therapist by therapist.

This is all very complex, and it's a lot. What I really want to stress here is that you don't have to go through this alone. You can ask the therapist directly if they can help, or administrative staff on their team, if they can talk to you about your insurance coverage. Ask if they have a financial counselor. A SHIP counselor in your area, which is the State Health Insurance Assistance Program, can really walk you through the different benefits and plan options for you. And of course, the Parkinson's Foundation Helpline can help with some of this as well.

That number is 1-800-473-4636. Ultimately, it's really important for each individual to explore their coverage and costs depending on their insurance plan and care needs. It's not necessarily fun or easy to navigate all of this. It can be kind of intimidating at times. But I definitely want you to know it's not something you have to do alone. I hope that this webinar, in addition to the previous one, gave you a little bit of clarity around this and a starting place. You'll be able to refer to these slides later, so I'm not really going to talk about this, but I did list some questions that you can ask.

General questions around the clinic and your coverage to see if a therapy is covered, if they can do ongoing therapy. Then I also broke this into rehab therapy, including the ongoing therapy and mental health, and what you can ask if someone does not take your insurance. It's a lot. Thank you all so much. And now I'd love to pass it over to my colleague from AARP.

Adolfo Diaz 00:37:58
Thank you, Jessica. That was great.

Just a note for our audience: we've got so many questions flying in. We know this was kind of a very quick overview. We are going to try to get to as many questions as possible, so we're going to ask you for your patience. We're going to extend another 10 minutes. We had a 2:00 start time, so we're going to go an additional 10 minutes to see if we'll have an opportunity to address some of the many more specific questions that came in through the chat on our Zoom meeting here today. Now, it is my pleasure to welcome our second guest speaker, Carrie Blakeway Amero.

She is the director of long-term services and supports at the AARP Public Policy Institute. Carrie has worked in the field of long-term services and supports for over 20 years. Her work has focused on improving service systems for people who are aging, people with disabilities, and others with chronic conditions, as well as their caregivers. She'll be speaking today about what you need to know regarding Medicare, Medicaid, and Social Security. Welcome, Carrie, and thank you for joining us.

Carrie Blakeway Amero 00:39:11
Thanks so much, Adolfo. I'm really happy to be here with you all.

As Adolfo said, my name is Carrie. I work for AARP in the Public Policy Institute, so we do research and policy analysis. I lead the research we do focused on long-term services and supports. I'm going to talk to you a little bit about what we mean by long-term services and supports. People often will call this long-term care. I think that's probably more common, to hear it referred to as long-term care. But similar to what Jessica was saying about there being a little bit of confusion between home health and home care, there are a lot of different types of services and supports that fall under this umbrella of long-term services and supports that are really not care so much, not healthcare, but human services, which is why that terminology is different. It may be unfamiliar to you.

To pick up where Jessica left off in her discussion, I'm going to spend most of my time talking about Medicaid and Social Security benefits, but how they all fit together. Planning for your future long-term care needs can be very difficult to do, and it's not something that Americans tend to do very early. We usually don't really think about it until a need comes up. Of course, it's hard to know what you're going to need in the future. But we all know we're going to need some healthcare. Certainly everyone on this call knows that. Most of us will likely need some long-term services and supports in addition to the healthcare.

They say about two-thirds of people who are over 65 will need some long-term services and supports. How much and how long really varies. One thing to keep in mind is women, regardless of condition or type of disability, do tend to need and to use long-term services and supports longer and more than men. That's something to keep in mind.

On the next slide, I want to talk about this puzzle that we think about when it comes to long-term services and supports. There are a lot of different pieces that you have to make decisions about. There are a lot of choices that families need to make when you're putting this together, because when it comes to having a disability or a chronic condition, there's not one treatment plan for everybody. There's not one program that pays for everything you need. You're having to piece things together depending on what you need, what your preferences are, what you want, what you can afford, and there are a lot of decisions to be made.

We actually do have some more resources about long-term services and supports choices on our AARP website there. But I'm just going to talk about each one of these puzzle pieces kind of briefly, the first one being workforce.

Most of you may already realize this, because we have so many care partners on the phone, but most long-term services and supports in America are provided by family and friends. Sometimes, in addition to the supports that you get from family and friends, you may need paid supports. The Medicaid program, so not Medicare, pays for almost half of all paid long-term services and supports that people get in the United States. That doesn't mean that they pay for everything that everyone needs, but it is the biggest payer. Certainly one of the biggest misconceptions is that Medicare will somehow contribute to this, and they don't very much except for that limited home health benefit that Jessica talked about.

The one thing I wanted to mention on the slide before I go on and talk more about Medicaid is that the Medicaid program is a state-level program. It's very different from the Medicare program, which is operated at the national level and is a federally funded program. Medicaid is a program that's shared between state and federal governments, but it's run at the state level, and it's often called different things. I don't know why states did this, and I sometimes wish they hadn't, but lots of states have named their Medicaid program something else. In California, for example, it's Medi-Cal. In Tennessee, it's TennCare.

Carrie Blakeway Amero 00:43:13
I live in Connecticut, and Medicaid is called HUSKY Health, I guess because we're the University of Connecticut Huskies. Like I said, I wish this wasn't the case, but it's even known by different names in different states. The other thing on this slide in terms of workforce is that VA benefits also are one way of paying for or supporting long-term services and supports. If you're a veteran, that's something to keep in mind.

Number two of the puzzle is housing. Most people would really prefer to stay at home when it comes to having long-term services and supports. There are also retirement communities or assisted living situations, which can be lovely. They can also be very expensive, and you have to be kind of careful about making sure you understand what kinds of supports and services come with the price of the housing. Sometimes there'll be a lot included, or gradual services that will increase over time. Sometimes there's very little included in the price of the housing. You need to understand that as you're making those decisions.

If the time ever comes when a nursing home is the best option for you, then that's also very expensive. It can be around $100,000 a year out of pocket. Medicare may pay for nursing home services in the short term, especially if it's following a short-term hospitalization or if you need short-term rehabilitation, but it's not going to pay in the long term for a nursing home stay. But Medicaid and Veterans Affairs programs are two government programs that will pay for nursing home services in the long run.

Like Jessica said with mental health providers, just because Medicaid pays for nursing homes doesn't mean that all nursing homes take Medicaid. You have to keep that in mind as you're looking.

The next slide is the third piece of the puzzle, which is services and supports. Like I said, there's a huge variety. Some of them are more healthcare-related, some of them are more human services, but it's a big mixture. Some of them can be delivered to you at home, or you could go to an adult day care center. Some of those adult day care centers are now open again after COVID. For a while, people were getting telehealth adult day, which was a little complex. But these are programs that folks can go to during the day for activities and opportunities to socialize and maybe get some therapy. There's also transportation assistance that can come through Medicaid and VA benefits.

When it comes to nutrition, Medicaid or Medicare typically will not pay for food or for meals, but there are programs through the Older Americans Act, from the Area Agencies on Aging, that will offer Meals on Wheels or congregate meals at a senior center. There's also the Supplemental Nutrition Program or food stamps that can help with that if your income is low enough. And then there are family caregiver supports, which I really wanted to call attention to here. Those are offered through the Older Americans Act program as well as through the VA. If you're a veteran, there are caregiver supports specific to caregivers for veterans.

If you're not a veteran, the Older Americans Act offers family caregiver supports, which can include respite care or caregiver support groups, just counseling assistance for caregivers. That's something you'd want to look up. On the very last slide of today's slide deck, I just want to call attention that there's a resource slide, so you can look at that at the end. There is information about how to contact your aging and disability resource center, which is how you connect with Older Americans Act services.

Carrie Blakeway Amero 00:46:31
Finally, number four of the puzzle is community integration. I want to call attention to how important it is, if you're getting long-term services and supports, that you keep up as much as you can with your friends and family and community connections. There are ways that you can get assistance doing that, primarily through labor investment systems. Career centers can help you get connected with volunteer opportunities or get transportation in some cases too. There are senior centers, community centers, and then you can also use some income supports to keep those community connections.

The next slide is probably the most important for today's conversation in terms of what I'm covering. This talks about the connection between a couple of Social Security income assistance programs and Medicaid and Medicare, which are the health insurance programs. I'll start at the top left of this slide because it can be a little confusing.

That's the Social Security Disability Insurance program, which is an earned benefit. That benefit is calculated based on what you have paid into the Social Security system over the course of working and paying taxes. For that program, SSDI, they don't really look at your assets or what anyone else in your household earns. It's based on your work history, how much you paid in over time, whether you qualify and how much that benefit is. If you can no longer work because of a disability or health condition, like Parkinson's, you would need to apply for that program through your Social Security office. I included the website on the resource slide for Social Security disability.

If you are found eligible after you apply, then there's no waiting period. You can start to get the SSDI monthly income every month. The average monthly income right now is about $1,100. That's $1,128 a month, actually. The max right now is $3,148, but that would again be based on your work history.

Then if you look at the top right, Medicare is linked to the Social Security Disability Insurance program because once you start getting SSDI, you can be automatically enrolled into Medicare. That's after a 24-month waiting period. It doesn't start right away, but after you've been getting SSDI for two years, you would be automatically enrolled in Medicare, which is a federal program. It's available everywhere. It's basically the same everywhere except for the differences between the standard and the Medicare Advantage. Most people don't get Medicare until they turn 65.

But if you are enrolled in SSDI, you can be automatically enrolled before you turn 65, just after the two-year waiting period. The Medicare premiums will be deducted from your SSDI checks. The other thing to mention is that if you do not enroll in Medicare before you turn 65, you want to go ahead and do that when you turn 65. Unfortunately, you cannot do that really any earlier unless you have a disability. Even if you start to claim your regular Social Security retirement income, you can start to get regular Social Security retirement at age 62 if you opt to get it early, but you still can't enroll in Medicare until you're 65 unless you have a disability or enroll in SSDI.

That's a mouthful. Actually, if you can go back, we're still on that one slide. Supplemental Security Income is the other type of Social Security income assistance that's important to know about. That has nothing to do with your work history. You may or may not have ever worked. SSI, Supplemental Security Income, is for people with disabilities who have severely limited income and assets, and like I said, who may or may not have ever worked. The amount of SSI that you get may actually be impacted by the income of the people who live with you. Your household income is a factor into that.

Once you have been determined to have a disability by Social Security and you become eligible for SSI, you actually have to wait for six months before that disability payment starts. Some states do add to this Supplemental Security Income, to what the federal government allows, but the average monthly payment for SSI is $577, so much lower, and that would be $1,191 for a couple.

Carrie Blakeway Amero 00:50:36
Another thing I want to mention about this slide is that you can actually get all four of these programs all together. You can have Social Security Disability Insurance and Supplemental Security Income. The amount of your Supplemental Security Income may be reduced by the amount that you get for SSDI, but you can get both together. You can get both of those and your regular Social Security retirement benefit if you start to get those when you turn 62 or when you're 65.

With SSI comes the association with Medicaid. This is not an automatic enrollment the way SSDI works with Medicare. If you're looking at Supplemental Security Income and Medicaid, it's not an automatic enrollment, but typically you will be found eligible for Medicaid if you qualify for SSI. Again, you can get all of these together. There are people that get both Medicare and Medicaid and both of these insurance programs. Now we can move to the next slide, and I'll talk a little bit more about Medicaid.

Like I said, Medicaid is incredibly complicated because it's different in every state. The mix of federal money and state money goes to pay for the program, but the states really get to decide what they cover and for whom. To qualify for basic Medicaid coverage, so that would just be for maybe an adult with young children or a young adult who has a low income, you need to have a low income and limited assets. The low-income level is often tied to SSI, but sometimes you can still qualify for Medicaid even if you make more than the SSI eligibility threshold.

To qualify to get Medicaid long-term services and supports is different. You still need to be low income and you still can't have that many assets, but then you also need to be found functionally or medically eligible, which means that a nurse or a social worker or sometimes a physician needs to have done an assessment and determined that you need assistance to allow you to function independently. That's kind of a different eligibility threshold than it works for standard Medicaid.

The enrollment process is really varied, but because of that two-part eligibility threshold, there's the financial and there's the functional. It's usually a two-step process to find out whether you're eligible for Medicaid and then what you could get. That's a process that you want to start with your Area Agency on Aging or your Aging and Disability Resource Center, which is information I had on the last slide. You could also look up your state Medicaid agency, and they can start that enrollment process for you as well.

The nice thing about the Medicaid eligibility is that in some cases your spousal income is protected. If it's a couple and one of you is found eligible for Medicaid, you can be found based on half of the assets that you have as a couple, protecting that other half that your spouse may have so that later he or she could use that for their own long-term services and supports if need be.

The other thing to keep in mind, and this is important to think about when you call to ask what might be possible in terms of Medicaid for long-term services and supports, is that you should know that if you are found eligible for Medicaid long-term services and supports, getting services in a nursing home is an entitlement. You are entitled to nursing home services. Of course, that may not be what you want. You might much prefer to stay at home and get long-term services and supports at home. In that case, there are two possible options.

Some states have an optional benefit called its personal care program. It's optional, like I said. Not all states have it, but most of them do, and that would allow you to get some home care. That would include homemaker services, chore services and meal preparation. It doesn't necessarily have to be home health. But that could be paid for by Medicaid at home if your state has that personal care option and you qualify.

The second option at home, and this is something that you may need to ask for because folks might not mention it to you, is that there's a home and community-based services option. Every state has at least one home and community-based services program that's operated by Medicaid, but they're not necessarily statewide. Sometimes they're only available in a certain area. Sometimes they don't serve your particular population. Some of them are dedicated, for example, to younger people with developmental disabilities, but a lot of states have home and community-based services programs for older adults or people with physical disabilities, which Parkinson's would count in that category. If you are interested in Medicaid and you're calling to apply, you want to be sure to ask about the personal care option or the home and community-based services option in addition to a nursing home option because those options may be available.

Carrie Blakeway Amero 00:55:48
It may not be 24-hour services the way you would get in a nursing home. But it could be eight hours a day, or it could be intermittent services that would allow you to stay home with maybe another family caregiver or someone to fill in to support. Again, because these programs all have different names and because not all of them are available everywhere, it's important to ask. One of the things that I would recommend, and then we can stop and take your questions, is to ask about long-term services and supports or long-term care in an open-ended way.

If you call and say, "I want to know if I'm eligible for Medicaid," they may ask you a few questions and tell you no, and then that'll be the end of the call. But if you call and say, "I need some assistance with long-term services and supports. Can you tell me what options you have?" the Aging and Disability Resource Center should be able to tell you about this whole range of things: what you might be able to get from Medicare, from Medicaid, whether there's a Home and Community-Based Services program, whether you might qualify for VA benefits, whether there's an Older Americans Act program. Keep asking open-ended questions, and hope that someone will tell you the full list of things that you might want to look into.

There might also be state and locally funded programs that would be available to you if you ask that in an open-ended way. That is a lot to cover, but I'm going to stop, and I hope that we still have time for some questions. We'll turn back to Adolfo.

Adolfo Diaz 00:57:20
Thank you so much, Carrie and Jessica, for all of your information. What we'd like to do now is try to weed through a few of these questions, and we'll be grouping some of these together. One that comes right off the bat, and several of the comments and questions have been referring to just this last part you were talking about, Carrie, which is regarding the home and community-based waivers. Some individuals have been asking whether you can have a family member provide that service and then have some type of compensation or coverage for that, or whether it must be an outside provider through an agency that you access this.

Carrie Blakeway Amero 00:57:57
That's a great question. There are some states, I think 45 or so, that have home and community-based programs that are paid for by Medicaid that offer what they call a self-directed or a consumer-directed model. With that model of program, the person who qualifies for Medicaid, so in this case the person with Parkinson's, would be able to direct their own services. Often that means they can hire whomever they would like to provide their personal care or home care or some of the things they get at home, which means that they could potentially hire their spouse or their family member.

The issue, again, is that those rules about who can be hired, whether or not family members can be hired or whether you have to hire an agency, vary in each state. If you're interested in that option, again, ask an open-ended question: Is there a home and community-based services Medicaid program for me? And if so, is there a self-directed or a consumer-directed option that would allow me to hire my care partner to provide those services? Because that can really be an excellent way to get the services you need and also add some additional income to your household.

Adolfo Diaz 00:59:06
And a follow-up to that, Carrie. Are there specific other groups perhaps? You mentioned the importance of maintaining relationships in the community for some of those natural supports. But are there other opportunities where individuals can seek assistance or support, whether it's through a community center that might provide it, volunteer organizations or some sort of centralized place they might try to look for these? Or is it state by state, or is there a national program?

Carrie Blakeway Amero 00:59:38
Recognizing that long-term services and supports is this big, complex puzzle and there are so many players in the mix, the federal government, I guess it's been about 15 years ago now, launched the Aging and Disability Resource Center initiative. I included information about the Aging and Disability Resource Center, or ADRC, initiative on the last slide, but those organizations are specifically designed to keep up with what's available in every community.

They're usually locally based, so they might serve a few counties, but they are really the organization that would be in the best position to know exactly what's available in your neighborhood. There really could be a private charity or a private foundation or a hospital network or a community system that offers opportunities in your neighborhood that no one else would really know about except for that ADRC. They usually keep a big inventory or database of all of the various programs and opportunities that there might be for recreation, volunteering, lawn care, companionship, someone to play chess with. They tend to keep a huge database, and they're a great resource.

Again, that's the same organization that could connect you with a Medicaid application. It could connect you with the Older Americans Act. It could even help you make the right connections with the VA if that's an option for you. They can also connect you, and they often sometimes run the State Health Insurance Assistance Program that Jessica mentioned that helps you with Medicare. The Aging and Disability Resource Center is really probably the first place you should turn if you're looking for a wide range of things.

Adolfo Diaz 01:01:14
Great. Thank you. I know we hear oftentimes on our helpline at the Foundation where individuals have also found some supports through faith-based organizations. Many of which will have programs, whether it's a visiting nurse or exercise programs or Meals on Wheels. To our knowledge, for the most part, it doesn't require whether you're practicing a particular faith or even a member of that congregation. It's certainly another avenue for individuals to look through.

Carrie Blakeway Amero 01:01:48
That's absolutely true.

Adolfo Diaz 01:01:49
The next couple of questions I have are for Jessica. We have a number of questions where individuals are trying to drill down on this difference between a supplemental plan, Medicare supplements versus an Advantage plan. Is this something that someone should, or are they able to, switch back and forth if they decide, or if they find that there's a significantly higher premium on one versus another? Jessica, if you could elaborate a little bit on that.

Jessica Shurer 01:02:17
Sure. I just want to re-emphasize there that I definitely recommend watching the June webinar because they really break that down way better than I can. Medicare Advantage plans fall under Part C of the alphabet soup, and it kind of bundles everything together: your drug plan and Parts A and B.

In the last webinar, she explained it really well where she said that Original Medicare is kind of like if you go to a restaurant and it's all a la carte, like you pick from the menu what you want. There's appetizer and entree and dessert, and that's sort of your A and B. If you add a D drug plan or you add a supplement, that helps to supplement some of those costs. Those supplemental plans are usually also through private health insurance companies, and again, it's really meant to supplement things that A and B aren't covering.

Like I mentioned for outpatient rehab, for example, Medicare B will cover 80% of outpatient, which means you're responsible for 20%. But if you have a supplemental plan, that plan that you bought into might not cover that remaining 20%, or it might cover all of it or part of it.

Whereas Medicare Advantage plans, how she explained it in the last webinar, was that it's like if you go to a restaurant and it's a prix fixe menu. They might give you this great meal, and you might pay a little bit more for it, but you're being presented with, "Here are all these awesome things that you can eat, but you only have two choices between each thing that you get to eat." I am not explaining this as well as she did, and now I'm hungry. But there's not necessarily, I don't think, one that's better than the other. It's really just the plan that's right for you.

I think that's why it's really helpful to work with someone like a SHIP counselor, maybe before getting Medicare or when the next enrollment period is coming up, to look at the options. You can look at the drug formularies to see what you're taking and how they're tiered, and how much coverage you're going to get based on those different plans.

I don't have a full understanding of how this works, but I do believe that if you have a Medicare Advantage plan and then the next year you want to switch to Original Medicare with a supplemental plan, there might be some higher costs associated with that because you hadn't gone with Original Medicare first. I hope that, Carrie, do you have anything to add to that? I hope that I said that correctly.

Adolfo Diaz 01:05:25
Thank you. One of the other related questions that comes up is how do you find a provider for Medicare? I'm just going to go ahead and jump on that one and put there is a website that we refer to a lot on the helpline. I just placed it in the chat for everyone, which is medicare.gov/care-compare. This has a listing of all providers, whether it's nursing homes or institutions that accept Medicare. This is one other avenue or resource that you have at your disposal.

Jessica, another follow-up question that we have: someone wrote and said, "I have three referrals for therapy: physical therapy, occupational and speech. Does Medicare cover all three, or do I have to take one or the other? How does that work?"

Jessica Shurer 01:06:20
It covers all three. Again, in 2018, when they did away with the cap or the threshold for how much therapy, any of them, you could get within a calendar year, that doesn't so much matter anymore. It's more around medical necessity. For me, as a clinical social worker on the care team, what I cared most about is that most people with Parkinson's at any given time, there is the argument that they could benefit from physical, occupational and speech therapies. I've definitely had many patients over the years that are like, "I want to do all of it right now. Give it all to me."

But I've also had a lot of people where I have to help work through prioritizing that because it's a lot of appointments in a short period of time. Maybe if your speech and your ability to communicate, and how cognition plays into that, is really what's most impacting your quality of life and day-to-day functioning, let's prioritize doing speech therapy right now. After that, we can then do the physical or occupational therapy. Insurance will cover all of that, again, more around the medical necessity of it rather than how many therapies you're doing in a given time.

Adolfo Diaz 01:07:37
Great. One other tip for our viewers is, as was mentioned in the slides that Jessica was presenting, whenever you have any acute in-hospital stay, that is sort of like your free ticket to therapy. As you mentioned, there are a lot of hurdles and a lot of individual situations regarding medical necessity, maintenance, et cetera, things that you need to work through with your therapist. It does rely a lot on how well your therapist documents. But when you have an acute hospitalization, don't ever leave that hospital without getting discharge orders for rehab therapy because that is kind of, when you have an acute incident, that free ticket that you will automatically, in 99% of cases, qualify for therapy.

Then I'd like to switch back over, Carrie. We have some more questions regarding the whole concept of SSDI and how much you can earn and how you qualify, and a very interesting question, this whole group here of them. In one sense here, for a woman who has worked enough to get Social Security but has been primarily a homemaker and caregiver of elderly parents, can she still qualify for SSDI? And can you get both Social Security and SSDI?

Carrie Blakeway Amero 01:08:59
Yes. If you've worked enough to get Social Security retirement, you should have worked enough then to qualify for SSDI, but some of that will depend on how much you earned those years. How much you will get is the question. But yes, then you can also get your Social Security retirement benefit at the same time. If you've done both, you can get both as long as you qualify and meet the eligibility criteria for the SSDI program.

Adolfo Diaz 01:09:28
Okay. Another question we have time for: we're going to do two more questions, and several questions have come in on this next one. If someone moves or is in a different state, so we have the scenario where someone has an elderly parent who lives in one state and has been receiving benefits in that state, and now they relocate them to be closer to family in another state, which state Medicaid program takes over, or who makes the decisions?

Carrie Blakeway Amero 01:09:59
It's going to involve changing programs. Unfortunately, the Medicaid program in the state where you're leaving is not going to want to continue to serve you. What's going to have to happen is you would need to reapply for Medicaid in the state where you're relocating. Hopefully, if you're on Medicaid right now, your existing case manager should be able to help you with that process. But that doesn't mean that they're going to fill out the applications or hold your hand all the way through it. It just means they should be able to at least connect you to the right organization in your new state to help you apply. Unfortunately, it doesn't transfer.

There's still a good chance you will be eligible for Medicaid in the new state. Not always, but there's a good chance. But you would still have to go through that whole eligibility process, including the functional assessment, because states even have their own rules about what level of assistance you need in order to qualify. Even though you've been assessed and been receiving services in one state doesn't mean that they're going to see you as needing the same level of services in your new state.

Jessica Shurer 01:11:03
Carrie, I recently had a patient - I don't know the full details on this or how much this applies across the board - who lives here in North Carolina. His family was thinking about moving him to a different state. I forget what state. He has Medicaid here, and they were told that he can't actually qualify for Medicaid or start being covered under Medicaid until he's actually there, physically living in the other state, assessed and applying there. They were hoping to move him directly into a skilled nursing facility under Medicaid, but it's not that easy, unfortunately.

Carrie Blakeway Amero 01:11:45
When it comes to a skilled nursing facility, sometimes they will be willing to accept someone in anticipation that they're going to be found eligible for Medicaid. The nursing facilities are pretty good at just looking at a minimal set of financial and family situation information to see you're going to be eligible, and sometimes they'll let you be admitted while that's still pending. But especially if it's home and community-based services, there tends to be a little bit of a gap while you're applying for the new program.

Adolfo Diaz 01:12:17
Okay. And our final question, which I think sums up a lot probably of what our viewers are experiencing. Someone said, "Is there a system that a family can go into to input data, income, assets, and determine what they qualify for in regards to SSI, SSDI, Medicaid? Too many programs to navigate." Challenging. What should be their first starting point?

Carrie Blakeway Amero 01:12:44
I tend to understand information better when I'm talking to someone who I can ask questions to. My inclination would be to start with a phone call to your Aging and Disability Resource Center, but there is a program from the National Council on Aging called BenefitsCheckUp. It offers an online system where you can put in some basic information, and it will tell you, for some set of programs, what you'd be eligible for. So you don't have to do a bunch of different applications. BenefitsCheckUp might be a good place to start if you're just online and you don't want to talk to somebody quite yet about it.

That's the National Council on Aging. I don't think I put that resource on the slide, but Danielle did for us. That's at least one option to try to simplify. That was their whole goal: to try to make it so that you didn't have to enter it in a bunch of times.

Adolfo Diaz 01:13:38
I think one closing remark that we'll give to all our viewers regarding all of this, as we said, is that there are many programs, as was indicated, and great resources that have been listed here and you can see on the next slide coming up. But it's important that people understand the role of self-advocacy. There's a lot of confusion. Jessica, you made a comment that you can't assume that the person you're speaking to may necessarily have the correct information. It shouldn't be that way, but unfortunately, people do need to really advocate for themselves and not take no as the final answer. If somebody says no, it just means they need more information about your situation.

Always inquire. Always find out: is there an appeal process? Anything that gets refused, whether it's an insurance, whether it's one of these government programs, you should always find out what is the due process? How can I appeal this? Because there are always exceptions to every policy and procedure that's in place. Sometimes the people who are the best advocates are the ones who are able to access the most resources.

Carrie and Jessica, thank you so much for all the information and for your time. We thank everyone who's been viewing and participating in today's webinar. We've got a slide up there that shows some of our many resources, both for the Parkinson's Foundation with obviously our helpline, our 1-800-4PD-INFO, which is 473-4636, as well as the many free books that we have, our Aware in Care Hospitalization Kit. Please be sure, if you have any doubt, to either call the helpline or visit Parkinson.org, as well as our great partner, AARP. You can see they have a whole page and site dedicated specifically to Medicare issues and a number of these resources that were referred to.

Lastly, as we close the webinar, we will have an online survey that's going to pop up. Please, please, your feedback is very important. In fact, this webinar was the result of the feedback from the prior one. We want to hear from you and want to make sure how we can improve future webinars. Once again, this webinar has been recorded and will be available on demand and for viewing in approximately 48 hours. You'll be receiving an email notifying you once that link is up. Thank you so much for being with us today. Again, please fill out the evaluation. We look forward to connecting with you again in the future. Good health and good luck. Thank you.