Long-Term Care: Where Are We and What’s Next?

1:30 p.m. –1:35 p.m.      Welcome and Introductions

• Kathryn B. Martucci, MPH

Director of Policy and Programs, Alliance for Health Policy

@allhealthpolicy

• Rachana Pradhan

States Reporter, POLITICO

@rachanadixit

1:35 p.m. –2:10 p.m.      Welcome and Introductions

• Anne Montgomery, M.S.

Co-Director of the Program to Improve Eldercare, Altarum

@Altarum

• Jean C. Accius, Ph.D.

Senior Vice President, Thought Leadership
and International Affairs, AARP

@JeanAccius 

• Camille Infussi Dobson, MPA

Deputy Executive Director, ADvancing States

@ADvancingStates

• Maureen Hewitt, MHA

President and Chief Executive Officer, InnovAge

@MyInnovAge

2:10 p.m. – 2:45 p.m.         Moderated Discussion with Audience Q&A

(This is an unedited transcript. For accurate quotes and presentations, please refer to the full-event video.) Speaker 1: The broadcast is now starting. All attendees are in listen only mode. Kathryn M.: Hello, and welcome to our webinar on Long Term Care: Where Are We and What’s Next? Speaker 1: Muted. Kathryn M.: My name’s Kathryn Martucci. I’m the Director of Policy and Programs at the Alliance for Health Policy, and I will be introducing today’s discussion. For those that are not familiar with the Alliance, we are a non-partisan organization dedicated to advancing knowledge and understanding of health policy issues. We do not lobby or advocate, or take any policy or political positions ourselves. Instead, our mission is to educate the health policy community. Kathryn M.: During today’s webinar, our panelists will explore the landscape of our current long term care delivery system, its funding mechanisms, and the impact that it has on stakeholders, such as older adults and caregivers. The Alliance for Health Policy gratefully acknowledges the National Institute for Healthcare Management Foundation for supporting our Beyond the Beltway health webinars for journalists series. We would also like to thank the Association of Healthcare Journalists for their help in shaping this series. Kathryn M.: If you’re interested in joining the Twitter conversation, you can use the hashtag, AllHealthLive, and follow us at AllHealthPolicy. Kathryn M.: I want to briefly orient you to the GoToWebinar platform, and go over some technical notes. We’ve taken a screenshot of the attendee interface, so you should see something that looks like this on your computer desktop in the upper right hand corner. You can click the orange arrow to minimize and maximize this menu. When you join today’s webinar, you were muted, and you will be throughout the presentation; but you can use the question panel to chat with us about any technical issues that you might be experiencing, and also you can send questions that you may have for the panelists there at any time. We’ll be collecting those throughout the broadcast and addressing them. Kathryn M.: So here’s our agenda for today. First we’ll have each of our panelists make some opening remarks to orient you to the long term care system. Then, we’ve allotted plenty of time for audience Q&A and moderated discussion. So again, feel free to be sending questions at any time. You will also find all of the materials that accompany this webinar, including a copy of the slides, a resource list, and an experts list, on our website, AllHealthPolicy.org; and then a recording of the webinar will be made available there in a couple of days. Kathryn M.: So now I have the pleasure of introducing our guest moderator for the day. Rachana Pradhan is a healthcare reporter for POLITICO, where she focuses on Medicaid and ACA private insurance markets. Prior to this position, she worked at Inside Health Policy for three years, and was also a city government reporter at The Daily Progress in Charlottesville, Virginia. She is a recognized health policy expert and has appeared on multiple media platforms such as CNN, MSNBC, Fox News, and CSPAN. So we are very honored that she has decided to lend her expertise and her moderating expertise with us today. So with that, I will hand it over to you, Rachana. … Kathryn M.: It’s maybe on mute, Rachana, are you- Rachana Pradham: I’m just going to … I am. Can you all hear me? Kathryn M.: Yup, you sound great. Rachana Pradham: Great, so let me just … I’m going to briefly just introduce all of our panelists who are joining us today. Then we’ll get started right away. Rachana Pradham: So first, is Anne Montgomery. She is the Deputy Director at the Altarium Institute’s Center for Elder Care and Advanced Illness where she manages a portfolio centered around the coordination and integration of medical care and long term services for the aging population. Anne was formerly a congressional staff member for both the Senate’s special committee on aging, and the House Ways and Means committee. Rachana Pradham: Next, we have Jean Accius. He’s the Senior Vice President of Thought Leadership and International Affairs at AARP. He provides expertise on the aging population, both domestically and internationally. Jean has been recognized as a Gerontological Society of America Fellow, and received the Share Care Award for his groundbreaking work documenting male family caregivers. Rachana Pradham: Next we have Camille Infusi Dobson, who’s the Deputy Executive Director at Advancing States where she provides guidance to state aging and disability agencies on managed long term services and supports, and quality management. Prior to her current role, Camille worked at CMS for 10 years managing Medicaid policy and operations. Rachana Pradham: Finally, we have Maureen Hewitt, who’s the President and Chief Executive Officer of InnovAge. In this role, she leads the strategizing and growth of the largest provider of PACE. Rachana Pradham: So now we’re going to have Anne start, who will go over for us the current state of long term care. Anne Montgomery: All right. Well, good afternoon friends and colleagues, and many thanks to the Alliance for Health Policy. It’s one of my very favorite organizations, and that’s because I had the honor of working there years ago with Ed Howard and also alongside Sarah Dash when we were both serving on Capitol Hill. Okay, next slide. Anne Montgomery: So here’s a little bit about Altarium, just to give you give a sense of what we do. We’re a health services research organization, and at the Program to Improve Elder Care, which I now have the privilege of co-directing, we work hard to come up with solutions that improve any number of aspects of elder care. We have projects looking at financing quality workforce and more. Next slide. Anne Montgomery: This is a comparison of where we’ve been and where we’re going. This is over only 10 decades from 1960 to 2060. I think it’s an astonishing demographic shift, and I never really tire of marveling at the progress that this slide highlights. Not withstanding political turbulence, we’ve made huge progress in providing better and better healthcare services, and our public health system has done wonders in preventing and controlling infectious diseases. Now we’re in an area where chronic disease and the functional limitations that characterize old age are becoming paramount; and that’s what we’re talking about today. Next slide. Anne Montgomery: Spending however, current spending, is not reflecting the needs and priorities of a surging older population of frail elders, which who need access to an array of non-medical supportive services such as those covered by the Older Americans Act. You can see the yawning gap here. This chart focuses on Medicare, and the contrast between spending in that program and the Older Americans Act; and the gray bars represent population growth. We’ll talk about Medicaid a little bit later. Anne Montgomery: A decade from now, that upward curve for Medicare is projected to go up far more sharply unless we make significant changes starting now. We’re in the process of adding tens of millions more older Americans who will be increasing seeking long term care. So, it seems very important to quickly engineer a series of multiple changes in service delivery through policy shifts. That means working with Congress, with states that mainly administer Medicaid, and with local governments and willing stakeholders. We have a great panel to discuss all this. In other words, our abbreviated timeline of 10 years suggest it would be a good idea to develop a strategy that we all work from, and that can be rapidly executed, and which modifies and improves on what we have in place. That’s the angle I’m going to be taking today. Next slide, please. Anne Montgomery: Let’s talk about what states can do first. We know that states have done a lot over the years to diversify their LTSS systems, but there’s still a ways to go. Here are data that show this from IBM Watson Health from all states except California and South Carolina. In terms of HCBS spending, we have states that range from 27 to 81% of their total long term care spending, and the average is 57%. There are major disparities between populations, with 78% of LTSS spending on the population dedicated to HCBS compared to 45% for older adults and individuals with physical disabilities. We have an awful lot of people on HCBS waiting lists. 656,195 across the country in fiscal year 2016, for waivers alone. Anne Montgomery: So how can we best address these challenges? Next slide. Here’s one way: we can shape an initiative to expand the infrastructure for HCBS. There’s no conference on long term care that I’ve ever been to that doesn’t note the incredible lack of capacity that we have in affordable, accessible disability adapted housing in the direct care workforce, in transportation supports for people who use wheelchairs, and in supports for family caregivers. Such an initiative is in the making right now. There’s interest both in the Senate and in the House of Representatives in shaping a bill that will be called something like the HCBS Infrastructure Improvement Act. It will propose substantial grant funding for states that submit plans to make clear progress in continuing to shift their LTSS spending toward HCBS, along with coverage gains, and that build infrastructure in these areas. Next slide. Anne Montgomery: Without getting too much into the weeds, such a program, and it would not be small, would be a major one time investment in state HCBS capacity. A similar program that ran for five years, the Balancing Inventive Program that I was privileged to work on when I was on Capitol Hill, provided states with grants to make gains; and they all did. They got FMAP enhancements, Federal Matching Assistance Percentage enhancements to do the work. So there’s already a solid successful precedent for this approach. Anne Montgomery: Here’s how a formula could be constructed. We’ve done an initial run using these percentages for what states would get in terms of additional funding. These are the percentage increases states could apply for relative to their HCBS baseline spending. As you can see, similar to the Balancing Incentive Program, states that needed the most help to make progress in shifting to HCBS would qualify for grants at a higher percentage. In the last couple of years, we suggest also tying the funding not only spending, but to enrollment gains as well. With states that are already well along the HCBS trajectory, those getting .25%, being required to hit a target of moving 85% of their LTSS population to the HCBS sector, and states getting a .5 increase would be required to achieve 75% of all Medicaid beneficiaries enrolled in HCBS settings and so on. Anne Montgomery: A program like this could be five years, or seven years, or some other duration. It could be capped in total funding, or it could be open ended. It could make all of the targets mandatory that we saw in the last slide, or only some of them. So there are lots of levers and ways of making it work to fit the political circumstances of the House and Senate, and we’ll see what’s possible. But if we can do this, it will result in enormous improvements and gains in long term care; and because housing and transportation and workforce are essential to Medicaid but not in Medicaid, there would be a great deal of work done in information technology in order to coordinate and integrate with programs that are administered by other agencies. Next slide. Anne Montgomery: Now I’ll turn to Medicare and offer up two practical ideas that I hope you’ll like for making progress in the near term. One focus is on Medigap, which has more than 13 million policies out there, and which could be used to offer a low key and potentially actionable way to tackle the front end risk of needing long term care. Medigap is purchased by beneficiaries in the Medicare for fee service sector. We’ve already taken good steps to improve the Medicare advantage program a couple of years ago, with regard to enhancing MA plan flexibility to offer optional supplemental LTSS benefits. So, the basic idea of this is why not do something similar on the fee for service side? If Congress wanted to do this, we could build on the expertise of the National Association of Insurance Commissioners, which represents state insurance regulators across all states, NAIC develops state model laws, it created the original framework for the Medigap market when Congress directed it do that in the 1990 law. Anne Montgomery: So if the ways and means, and the finance committees decided to slightly expand Medigap, they could call for NAIC to develop a modest limited array of in home supportive services for personal care assistance, for home delivered meals, for care coordination, and perhaps a few other services. These are services that have been studied in depth by actuaries in Minnesota who have projected only a modest impact on Medigap premiums. There are ways of improving comprehensive long term care insurance, too, and there will be testimonies to that effect later this week in the health subcommittee of the Senate finance committee. In general, however, the longterm care insurance market has been struggling, and premiums have been going up, and for many existing policy holders, that’s presented difficulty. So it’s a troubled market. Next slide, please. Anne Montgomery: In thinking more about existing Medicare programs and how we can enhance and scale them, PACE comes to mind. I know we’ll hear more about that later. At Altarium, we’ve been looking at PACE for the last couple of years, and how it can be used to slow spend down in Medicaid; because Medicaid won’t be able to fully absorb millions and millions more older adults who are accessing it mainly in order to get long term care. We simply must build better capacity that Medicare beneficiaries can easily and reliably access and use. Anne Montgomery: What we’re recommending for PACE is to create a clear pathway to enroll Medicare only beneficiaries, which is really very difficult today. To make that happen, we’re going to have to reduce the costs of Part D coverage, which is astronomically high due to a statutory conflict between the 1997 PACE originating statute and the 2003 Medicare Modernization Act that added prescription drug coverage to Medicare. Today, if you’re a Medicare beneficiary wanting to buy into PACE and you can afford to pay for your own long term care because you’re not eligible for Medicaid, you’re forced to buy the PACE Part D plan, which is 10 to 20 fold more expensive than a regular standalone Part D plan. Anne Montgomery: There are many reasons for this sticker shock, which we can talk about during Q&A if you’re interested. But right now, let’s skip to the solution, which is to give Medicare beneficiaries a choice of buying either a local Part D prescription drug plan, which is often about $50 a month, or the more costly PACE Part D plan, which can run $800 to $1200 a month depending on where you are. If we take this step, then I think we can include PACE in the array of first class Medicare providers. Next slide. Anne Montgomery: Then, we can do a lot more. We can take PACE and make it the healthcare hub for a locally anchored system of care that connects with many, many different community based organizations that offer supportive services; I’m thinking of those in the aging network and elsewhere. The hub could be an MA plan, too, or perhaps a federally qualified health center, or some other healthcare provider. But PACE, with its community infrastructure, its medical centers, its salaried interdisciplinary teams, its reliable transportation system, has a long track record of serving communities really well, and not pulling in and out depending on quarterly earnings; so it’s poised to do a particularly good job. Anne Montgomery: The various components of this puzzle piece are basically how we at the Program to Improve Elder Care with thanks to for leading the way, conceptualized what a community anchored mixed healthcare and long term care system would include. We can talk about that more if you’re interested. Next slide. Anne Montgomery: Now I’ll just say thank you. Thanks so much. Rachana Pradham: Great. Thank you so much, Anne. So now I’m going to turn it over to Jean, and Jean is going to discuss older adults caregivers and existing federal programs. Take it away. Jean Accius: Great. Well, thank you very, very much, and thank you Anne for that great presentation. I thought that what I would actually do is just give you some background information in terms of AARP, and then give four key takeaways from my presentation today. So if we were go to get … Next slide. Jean Accius: So I would like to just start off by just giving you a sense in terms of exactly who we are as an organization. We were founded over 60 years ago by Dr. Ethel Percy Andrus, who was a retired principal who went looking for a retired friend, who was a retired teacher; and found her living in a chicken coop. Outraged by that experience, she created AARP, an organization founded with the full focus of insuring that older adults could age with dignity, independence, and purpose. For more than 60 years, we’ve been on this mission. So we’re a non-profit, non-partisan organization. We’re dedicated to empowering people to choose how they live as they age. We have over 38 million members, and offices in every state, Puerto Rico, and the US Virgin Islands. Every day, we work to strengthen communities and advocate for what matters most to them, as well as their families; that primarily focused on health security, on financial stability, and personal fulfillment. Next slide. Jean Accius: So there are a couple of key takeaways from our presentation today. The first one is that the population is aging, growing, and living much longer. The second is that the demand for long term service and supports will more than likely increase. The third is that as baby boomers age, there will be fewer family caregivers to support them. There should be one more bullet there that talks about now is the opportunity, and that opportunity is to really think about innovative solutions that cross across public and private sectors to help address the challenges, and ensure that people can actually age with options. Next slide. Jean Accius: So this slide gives you a good sense in terms exactly of the population growth and why we’re having a conversation today. There’s about 10,000 people who are turning 65 each and every day. According to the US Census Bureau, within the next couple of years, the number of older adults will exceed the number of children for the first time in US history. This has significant implications particularly for the work that we’re doing, and thinking about how this might impact communities, sectors, and systems. What you see on this slide is that the population age of 85 plus, which is a cohort that’s the highest need for long term service and supports, is projected to triple between 2015 and 2050. You can also see the growth by the other population as well. So the fastest growing age group is the 85 plus population, and then the second fastest growing is the 75 to 84. So we have a tremendous opportunity to think about exactly what does it mean in terms of population that’s aging, and growing, and living much longer? Then, the other aspect, I would just say is the fact that this also has implications for family caregivers. Next slide. Jean Accius: As you can see by this slide, the cost of long term service and supports exceeds what families can afford across the country. The average cost of a nursing home in the United States is roughly about $97,455. For a private nursing home stay in the US, what you see here is the fact that it would consume about 231% of an older middle income family’s income. For a semi-private room, you’re looking at about $87,600. That would consume about 208% of someone’s income. When you look at the medium rate of a private bedroom in an assisted living facility, that’s roughly around $45,000 a year. That would consumed roughly about 107% of a typical older family’s income. Then, just looking at home care, which is roughly around $33,540 a year. We’re just making the assumption here that this is care for about 30 hours a week from a licensed non-Medicare certified home health aid. What you see here is that, that would consume more than three quarters, or 80%, of the median income of older households. So one of the key points when you look at this slide is the fact that the high cost of long term service and supports, unaffordable across the country and for most Americans. Next slide. Jean Accius: Family caregivers are the backbone of our long term service and supports system. We just released a major report last week looking at the value of family caregivers, and there’s roughly about 41 million family caregivers in the United States. These are family members, neighbors, friends who are helping each other and providing what many would consider to be very complicated medical nursing tasks, such as giving injections, wound care, tube feeding, in addition to helping with bathing, eating, dressing, as well as providing assistance with transportation, finances. They, family caregivers, provide the majority of long term service and supports in our country. They are critical partners in helping individuals remain in their homes and communities. Caregiving is now a widespread issue, is a public issue, in part because of the fact that so many people are caregiving, or likely will become a caregiver. This crosses all political ideologies. This crosses all different age groups; one in four of caregivers are millennials. 40% of caregivers are men. So there’s a great opportunity to think about ways in which to actually support family caregivers. Jean Accius: The report that we released last week found that family caregivers provided in 2017 roughly 34 billion hours of care, and the economic value of that unpaid care was roughly around 470 billion dollars. So if you take into account that we have a population that’s aging, that the vast majority of individuals receive care from a family member or friend, and that these family members and friends are providing care at the tune of about 470 billion dollars on an annual basis, and then take into account that the number of family caregivers will unlikely keep up with the pace of the aging of the population, there’s some opportunities to think about ways in which we start to support and recognize these family caregivers. What you see on this slide is just a ratio, and what you can see here is that there’s almost seven caregivers for every one older adult. By 2050, that declines from seven family caregivers to one older adult. Next slide. Jean Accius: In addition to these caregivers providing the care, they experienced significant out of pocket costs. We did a study in 2016 that found that the average family caregiver was spending about 20% of their income on caregiving activities. So that’s roughly about $7,000. For caregivers who were providing care for long distance, that was roughly about close to $12,000. Next slide. Jean Accius: Several years ago in 2011, the AARP Public Policy Institute created the state score card. This right here is … We started the conversation back in 2011 wanting to get a sense as to what is a high performing system? What would that actually look like? We worked with advisory group. We came up with a framework that basically highlighted these five dimensions; and that a high performing system would include be affordable and accessible, that there would be adequate choice of setting and the provider, that quality of life and quality of care would be a critical component to the system, that there would be support for family caregivers for many of the reasons I just mentioned in the previous slides, and that there would be effective transitions between one setting to another. Next slide. Jean Accius: Just to give you a sense, so this framework was for the operationalized that in a high performing system, that consumers should be able to easily find and afford the services that they need, and that there be a safety net for those who cannot afford the services. Under choice of setting and provider, that the system would be person and family centered, and that there’ll be a place of high value on allowing consumers to exercise choice and control over where they receive services and who provide them. Under quality of life and quality of care, this was looking at the opportunity to really ensure that the services maximize positive outcomes for consumers, and that they’re treated with respect and that their personal preferences are honored; going back to what I was referring to in terms of our founder and her vision for older adults in this country. Jean Accius: Then, that in terms of support for family caregivers, that family caregivers, their needs will be assessed and addressed so they can continue to provide their caregiving role without being overburdened or stressed; and that in terms of effective transitions, that there would be a seamless transition between one setting to the next. When you look at these five different dimensions, you are able to collectivize data under each dimension, to be able to assess how a state is actually doing. So the scorecard is multidimensional where you can actually look at a state performance at an indicator level, or at a dimension level, which is these five; and then overall. Next slide. Jean Accius: What you find here, these are the overall rankings. So when you take into account the 25 different indicators across these five different dimensions, and you get an overall score. What you find is the fact that there’s great variation across the United States in terms of the systems of care, with respects to the delivery of long term service and supports. We can get into a conversation in terms of exactly what are the opportunities here. When we released our scorecard back in 2017, the number one state was Washington. Oregon and Minnesota were not too far behind. California is ranked nine. We can talk about some of the other states as well. The wonderful thing about this scorecard is the fact that even the high performing states like Washington state, Oregon, or Minnesota, or California, there are still opportunities, particularly at the indicator level, to improve. So there’s always opportunities to continuously improve to deliver services for older adults and people with physical disabilities. Next slide. Jean Accius: So some of the key findings from this report is that states must pick up the pace of change to meet the needs of a growing number of people who are aging, and also living with a disability. As I indicated before, you have a significant population who’s aging and needing services. The other point from this report is that where you live matters significantly. We can get into this conversation as well, and what are some of the policies that are in place to think about ways in which we can insure that people can receive services in the setting of their choice, and that is also cost effective. The third key finding is around measurement. What we found was the fact that for those indicators where there was a tension, where there was federal and state initiatives, Anne talked about as a perfect example, and stakeholder engagement, we saw a significant movement, particularly for those indicators. Then finally, Medicaid is a major driver of change. I know that Camille’s going to get into a Medicaid. So next slide. Jean Accius: So where do we go from here? Some of the things I think that’s important to think about, and we can have this conversation, is that as we think about strategies for not financing long term services and supports because of the cost … it’s unaffordable for the vast majority of Americans in this country; it’s important to think about what are those public and private sector solutions? No one sector can actually address the financing question by itself. So really thinking about exactly what are the opportunities, which gets to my second bullet, around the shared responsibility, the appropriate role for government, for individ