some quick other items, we are eliminating the use of restraint in the district and strengthening family council, forcing greater planning on the part of the emergency and non-emergency care for those services that are not provided to reduce transport trauma, increasing standards for our nursing home administrators not only in continuing education but also testing of competency to make sure you can sit through a class and finally something that is very important to me, improving the way in which our community is treated with an hour long term care capacity. ..

spoof >> we're going to begin our first panel now, which is an overview panel on who is getting and delivering care. we always think it's important in health affairs, particularly with respect to our policy audience, some of whom are encountering some of these issues for the very first time, to set the context and that's

what we strive to do in some of the opening chapters and articles in the issue, and are going to try to do today as well. i'm going to introduce our three panelists for our panel if sequence and then they will get up and present their remarks. you also have copies of their presentations in your packets. first we're going to hear from steven kay, who is associate adjunct professor at the department of health and behavior sciences at the university of san diego, he also serves as co-principal investigator at the center for investigative services which is a reabletative research and training center, funded by the national institute on disability and rehabilitation research. he's also co-director of the university of california at san francisco disabilities statistics center, and a co-principal investigator of the pacific a.d.a. center. he has a ph.d. from stanford. his primary research interests

focus on access to health care and long-term care among people with disabilities of all ages. we'll then hear from carol levine, who is with the united hospital fund in new york city. she there directs the families and health care project, which focuses on developing partnerships between health care professionals and family caregivers, especially during transitions in care settings. she directed the citizens commission on aids in new york city previously, and the orphan project. she was senior staff associate director of the hastings center and hastings center report before that and she was awarded the macarthur foundation fellowship for her work in aids research. she edited a book "always on care,," also co-edited a book of -- she has a deep personal

experience with being a family caregiver, having cared for her brain-injured husband for a number of years before his death. we will then hear from robin stone, who is the executive director of the institute for the future of aging services. at the american association of homes and services for the aging here in washington, d.c. since she started the institute 10 years ago, she's developed and directed a number of national programs, including the center for medicare education, the better jobs, better care national program, funded by the robert wood johnson foundation and atlantic philanthropy. she was a political appointee during the clinton administration, serving in the u.s. department of health and human services as deputy assistant secretary for disability, aging and long-term care policy. she also was assistant secretary for aging in 1997. she's been a senior researcher at the national center for

health services research, and at project hope center for health healthy communities fares previously, as well as -- health affairs previously, as well as at georgetown university. to begin, let's welcome to the podium, steven kay. >> some people focus on specific federal programs, or they might focus on quality issues or work force issues or family care giving, and they also tend to focus on specific population, such as the so-called frail elderly, on non-elderly people with disabilities or cognitive disabilities. as carol levine said in her article in this issue of "health affairs," the whole is often eclipsed by its separate parts

and this article is an attempt to paint a picture of that whole, although as i have i was thinking about this this morning, i realized that there were plenty of my own biases in it, and we include people receiving long-term care from public programs, from family members, from private pay workers, whether they're elderly on non-elderly, whether they're nearing the end of their lives or perhaps have a stable, perhaps lifelong disability. to do that, we analyzed and mitch laplante and funded by the national institute on disability and rehabilitation research. how many people need long-term

care services? well, that depends on how you define the long-term population. it can range all the way up to 11 million people, if you include people who need help with any kind of routine daily activity, or you can narrow that down considerably to about three million people, if you narrow the definition which is needing help in multiple activities of daily living, which is typically bathing and dressing, but any way you define it on the non-institution side, the non-institutional long-term care population is larger and often quite a bit larger than the institutional long-term care population, which numbers between 1.5 and 1.8 million people. who are the people who need long-term care services? well, it's well known that women dominate, especially in institutions, two-thirds are women, but you may find it

surprising, that half of the overall long-term care population is elderly, that despite the fact that the vast majority of people living in institutions are elderly, but overall, half of the long-term care population is elderly, even if you define it narrowly and you may be surprised to find that half of community residents to receive long-term care services live in or near poverty, meaning that their family income is less than 200% of the federal poverty level. who provides services to people who live in the community? as you would expect, a person's primary source of help varies considerably with their age. parents dominate for adolescents and young adults, as you'd expect, but by age 30 or so, the spouse becomes the dominant helper, followed by a daughter or a son, more often a daughter

than a son, and that holds true until about age 75, after which the spouses begin to decline in prevalence as helpers, and daughters mostly and also sons take their prominent place as primary helpers. only by age 85 do paid helpers really come into play. as you can see from this chart, unpaid helpers dominate for people of all ages. in fact, more than 9/10 of people needing long-term care services in the community get unpaid help. use of paid helpers increases with age, reaching above 80% only for people aged 85 or old older. who pays for long-term care services? that depends on the setting. on the institutional side,

medicaid dominate as the payer, but usually with a substantial co-pay, by the resident and his and her family, typically about $1,000 a month. for one-fifth of residents, the resident and his or her family pay all or most of the monthly bill, which is typically about $5,000 a month, quite a lot of money. med compare is not such a major player on the institutional side, except early in the nursing home stay, for the first 30 days, medicare really dominates as the main payer. on the non-institutional side, things are somewhat different. you may find it surprising that medicare and medicaid are roughly equal as the two main payers, that's because medicare pays for home health services for people of after a hospital discharge and that ends up being quite a lot of receipt of long-term care services in the community and again, one-fifth of the time it's the person and

his or her family who pays primarily for services but this time the bill is much less, typically about $250 a month and the reason it's less, people of save money by hiring workers themselves, by hiring directly, hiring an independent provider, which not only saves them money, but give thames more consumer control, in contrast to government agencies, which nearly always use agency providers, despite all the talk about consumer directed services. how much does it cost? well, in terms of medians, there's a factor of five. difference between the two. about $1,000 per month for a non-institutional long-term care services versus $5,000 for institutional services, but of course the medians don't tell the whole story. on this graph is the distribution of monthly charges. and it shows that

community-based long-term care services are almost always less expensive than nursing home services. nursing home services hardly ever cost less than $3,500 per month, but 87% of non-institution hall long-term care services cost $3,500 a month. now you'll immediately object that these are two very different populations, and yes, they are different populations, but maybe not as different as you think. i was certainly surprised by this result. the average number of activities of daily living that people need help with in the community is 3.5, compared to 3.9 for people living in institutions, plus, there are a lot of people with rather severe disabilities in both groups. 37% on the non-institutional side, 48% on the institutional side need help with five or more activities of daily living. five out of six.

so they're different, but not as different as you might think and yet we have this factor of five ratio and cost. in terms of national expenditures, we're getting an estimate of $147 billion per year in national expenditures. you can add or subtract about $20 billion, depending on what you actually want to include as long-term care versus not and how exactly you want to estimate the population, see the paper for details, but one thing that's very interesting is more than three quarters of that expenditure is $114 billion, is for institutional services, even though as you recall, institutional residents are a minority of the total long-term care population. and also interesting is the fact that 80% of those expenditures go to elderly people and as you remember, half of the long-term care population is elderly and half are non-elderly, non-elderly are only getting 20 paso robles. so let me conclude. i think this chart shows fairly

clearly that what we have is the long-term care system that's out of balance. most of the money goes to services that people don't want, institutional services, and the services that people do want, namely home and community based services, are often tightly rationed. i think it's going to be fairly hard to justify this 5-1 cost ratio when we found out that the populations really aren't that different, of course in terms of adl's and there may be other things that are going on and weephole anyway, the authors feel that the emphasis on institutional services for the elderly may end up denying non-elderly people who need long term services their fair share of the long-term budget. and we also think that there's evidence, some of which i showed, some of which i did not, that most people don't seem to use paid help when they have an alternative. and if fact, it's interesting that people don't even use paid help as secondary, as a secondary helper, in other

words, for respite care. that turns out to be very care, so from this, we wonder whether these concerns over the woodwork effect, namely that everybody is going to rush for services, if community based services are made available, we feel these concerns may be exaggerated and maybe the woodwork effect is less real than people think it is. thank you. [applause] >> thank you. i'm really delighted to be here and i want to thank susan dencer and all of the health care staff who are working so hard on this special issue and for the scan foundation as well. i also want to acknowledge my co-authors, debra, ariela and david gould of the united hospital fund.

steve set the stage very well for this. nearly every discussion of long-term care services and support starts with the statement that informal caregivers, families and friends, are the system's bedrock, i think i've said that a lot myself, but like bedrock, family caregivers and by the way, that's a term we prefer to informal, because inform am sounds so casual, so easy, so much fun, which it isn't. but bedrock is underground, bedrock is invisible, and when you start to see it, you get maybe a little nervous. i think that's what's happening in the policy world, we're starting to see these unde undergroundworkers, who are now start to go appear and make some demands. families have always played an important role in caring for people who are sick, or

disability, or age willing, but in the past few decades, family caregivers' roles have changed. in addition to providing social support, and assistance with everyday living, many are now taking on demanding medical and managial tasks, and let me tell you that managial tasks are just as hard if not harder than the actual provision of care. family caregivers, as this big large group, are very diverse. some provide a little bit of care, some provide a lot of care. my colleagues and i are focusing on those caregivers who are caring for the most vulnerable population, people with multiple chronic illnesses, multiple medications to manage, frequent hospitalizations, high costs. at the end of the day, for these caregivers, there is no end of the day. the institute of medicine recognized this in its 2008 report, retooling for aging

america, when it recommended that the definition of the work force be expanded to include family and friends. it also noted that it was not clear how to integrate family into health care practices. one of the purposes of our paper and of the united hospital fund's next step in care campaign which i direct is to demonstrate that it can be done and to give examples of how it is being done, so it's not -- there are models out there. ok. let's try this. whoops. i'm going back. sorry. do you want to get me back to where i was. ok. sorry. the next one.

>> fragmentation occurs within systems and between systems. individuals, patients and clients and their family caregivers move frequently between them. there are rapid, frequent, transfers from acute to subacute, to community settings and all back again. it's a big circle, and we've heard that from the councilman from d.c. this morning. home and community based services are sometimes described as patch work, a different program with different eligibility rules and run under different auspices, but a patch work suggests individual pieces sewn together to form a whole. community care is often just the patches, without the connecting thread. to navigate this complicated and still incomplete non-system, family caregivers are the ones who provide continuity, act as

advocates and quality sentinels for people who cannot manage on their own. transitional care, connects health care and long-term services at a critical moment for quality, cost, and outcomes. there are no discharges in transitional care. the handoff is not completed until the patient is under the care of a prepared provider, and family caregiver. involved in family caregivers is the transitional care is essential and there are several models that can be shown. as i mentioned, our next step in care campaign includes a web site, www.next step.org, with 18 guides through family caregivers an three for providers that are designed to improve transitions between hospitals, subacute rehab settings and home care agencies. it's also organizing a quality improvement collaborative in new york city in which 40 to 50

providers will work in partnerships to improve transitions in care. from our collaborative design group, six months of working with 14 providers, the biggest learning for the providers was meeting the people to whom they had been sending patients back and forth for years. they had never really talked to them about the processes. they talked to them about individual patients, but not the processes. it was amazing to them. we also recognize in the article, several models of transitional care that include family caregivers, been shown to improve outcomes and reduce costs and mary neal's transitional care model is one of them. and the guided care program at johns hopkins, directed by chad bolt and there are others out there as well. our article concludes with some recommendations. we want to encourage and develop

information about caregivers, not just in their psychosocial stay and what they do with ad l's and idl's, but how they interact with the health care system and the social service system and how those things could be improved by bringing them together. we believe that working with family caregivers, in this current and future environment has to be a core competency for all health care and social service professionals. this is not something that is intuitive. something that can be taught, can be learned, but it's extremely important. we want to encourage full integration of family caregivers in medical homes, transitional care programs, not just by name only, patient/family, but by explicit attention to what the family caregivers' needs, limitations and strengths are and finally we want to encourage creation of payment schemes that

includes family caregivers, needs assessment and support. policy makers are often moved by a family caregivers stories, but these stories, supported by relevant evidence and practitioner's commitment, must be translated into specific policy actions that address the needs of the family caregivers and the people they care for so devotedly. if health care providers and policymakers join forces with family caregivers, their combined efforts can be a positive force for better coordination and integration of all the elements of long-term care services. thank you. [applause] >> good morning everybody. i also want to thank susan, health affairs, bruce chernof

and the scan corporation and all of us authors collectively for i think putting together a fabulous volume and it's pretty cool of to have the first new health affairs bill, long-term care services and support services. as i said for over 30 years, the bastard child, and right now we're in the forefront, and i think that's fabulous. i've only got a few minutes to talk about what is i think a pretty important issue, probably the most important issue in all of this. i start with the caveat that our article, that i did with mary, who has been around for a long time, since early channeling demonstration days for those of you who go back that long, we focus primarily on the providers providing services to older adults, and that's not to say that there are not issues, substantial issues for the

provider community, formal provider community for persons under the age of 65. but most of our work has been done in the area of caring for the elderly, and we start with that, in addition, the literature is much stronger in the area of caring for older adults, so there is work that needs to be done on the work force caring for the younger populations and a lot of what we learned has implications for those populations as well. i also wanted to start with one other comment and that is, who provides long-term care in many ways, depends on your definition of long-term care and we will never -- we will never ever reach a consensus on this. but what i have come to and what we have recognized is that the long-term care, long-term services and supports formal service sector is somewhat unique, although embedded in the

larger health care sector. and somehow, we have to struggle and figure out how to get enough attention and enough investment in that part of the service sector that it begins to get parady, not only with other industries, but quite honestly, parady with the larger health care sector itself and i'll talk about that in a minute. i also think it's important to understand that medicare may not cover a lot of long-term care, but it covers a heck of a lot of post-acute care and in some respects, sometimes we talk about post-acute as long-term care, sometimes we talk about it as acute care. it's just one example of where these lines are incredibly blurred, whether we want to talk about it as long-term care or not, it is the long-term care providers in the formal sector that frequently have to deal with these issues. next to the family, they are the folks who are embedded in this mess of service providers across the acute primary, subacute,

chronic, and long-term care sectors as well as the preventive sector, so they are really key next to the family, in really holding all of this fragmented system together. in the long-term care sector as opposed to the acute and primary and ambulatory is primary the direct care workers, who are the hands-on system next to the family. about 70%, at least 70% of all services are provided by the front line. your cna's, your home health aides, your personal care workers. this is very different from the acute care and the primary care world, where you have a much heavier level of professional staff. on the other hand, the professional licensed staff, while fewer, have substantial managerial, clinical oversight, and supportive clinical work

that they have to do. these are the medical directors, the r.n.'s, lpn's, licensed social workers, all the therapists and the administrators and has you heard in d.c., where i live, the problem with the d.c. nursing homes, it's the people stupid. it's the people in these institutions, it's the people in home and community based settings who have not been given the supports, the training, the competency based orientation, and ongoing support to do their work well. it's very difficult to ask for quality when you have not supported the work force to do the job. this is a very labor intensive field. one of the most labor intensive, next to hotel industries, and so not to invest in our work force and to talk about a panacea for quality outcomes, without recognizing it's about what people do every day is really a mistake and our article basically tries to make the case

that this is where much of the investment needs to be. so we basically in this lay out a framework for assessing work force reform in the context of long-term care specifically and again, with the caveat that long-term care blurs with acute care, chronic care, preventive care, and it's very, very difficult to pull those out. number one, we have to look beyond traditional supply and demand theory. supply and demand theories don't work. we have a lot of demand for services, and we're going to see a lot more. that has not translated into more money, more than investment, and the supply and demand theory doesn't work in long-term care. a lot of the reason for this is we are heavily dependent on the public sector. unlike other parts of the health sector. almost all of our pay comes from medicaid and medicare.

and so we are dependent on the public payers, what they pay is what we get. that's not the way traditional supply and demand works. we are in a very different world than a lot of the other parts of the health sector. secondly, our framework argues that we have to recognize long-term care work force as a distinct, but related part of the health sector. because every time we work on health care reform, health care work force reform, the eye goes toward hospital and ambulatory and primary work force, the long-term work force for the most part has been an afterthought and we have to and we're beginning to see this with the elder care work force alliance, but specific attention needs to be paid to this long-term work force if we are going to develop this over the next 20 years, particularly with

the aging of the baby boomers, where we're really going to see some significant more demand in the future. the third is we have to be responding to new philosophies and models of care. we cannot do better integrated care without the work force to do it. the social hmo, 25 years ago, failed not because they didn't have an integrated, cap at a timed system. it failed because the system didn't know how to integrate, so it's the people in those models. it's the people in palliative care who need to be supported and have competency around that type of service. it is the people in transitional care. an electronic medical record is never going to solve our problems in transitions. it's about the people, knowing how to communicate, knowing how to share information, knowing how to hand off and take responsibility and be accountable. it's about developing those -- that training, that support, in

those philosophies and models and finally, defining needed competencies. if we don't know what a medical director has to do or an r.n. has to do or a social worker has to do for a front line caregiver has to do in various settings, how can we expect those people to produce? so a competency-based system is essential. and finally, the implications for long-term work force reform, what we need to be doing is to expand the supply, and i would argue that without the things that i just talked about before, and this is what we talk about in the article, without the investment, without the competencies, it is very, very difficult to expand the supply. because nobody wants to go into long-term care. so how do we turn that on its head? just as long-term care is going to be the economic driver in the 21st century in most communities, that is the sector that is growing the fastest. where are we going to get the work force to do it?

so expanding the supply is essential. investing in work force education and development, this is a serious issue. and finally, i just want to say that we have to make these jobs more competitive. it is not just for the front line, which is an abomb nation the level at which we pay front line caregivers, but you look at every different sector, if you look at nurses, if you look at physicians, if you look at social work, we did an analysis of the relative pay, wages, benefits, there is no parady across this sector and if we don't make the jobs more competitive, it will be difficult for us to create the work force we need. so i want to con chewed by saying, it's the people, stupid. we want to get to quality, and if we want to really support economic development in our communities in the 21s 21st century, we need to be investing in the long-term care work force. thanks. [applause] spoof [applause]

>> we're going to have some time now for q & a from many of you in the audience and others of you, authors who want to comment on these pieces as well. i'm going to take the moderator's prerogative of asking the first question, which is as bruce said earlier and as i said, we have major provisions of long-term services and support reform in the health care reform legislation, assuming enactment at least on one big piece, which is the class act, no money goes out the door to support care giving for five years, so we've got plenty of lead time to gear up the system, that will essentially be able to execute the kind of support that the class act will extend to families. also, of course, there are other provisions in the legislation that will kick in sooner, but

the class act is the compelling goal to shoot for or at least the day in which the dollars actually flow. i want to ask all three of you what you think the nation needs to do in addition to what's in health reform legislation to get ready for this day. i assume most of it builds on what you laid out in your pieces, but if we begin to think about the initial next steps that policymakers are going of to -- begin to take, so that we have the kind of community based system in particular, as well as transitional care system that can see the opportunities afforded by the class act and other provisions of health care real estate form legislation, where do we -- reform legislation, where do we start? robyn, let's start with you. >> i make the case in my article and mary and i make the case in the article, that at least in

part, it is a short and long-term investment in the people that do the care giving and this frankly includes, if i were going to write an article where carol and others had not written around family care giving, the family care give would have been included, because the family is really the first caregiver. but i think that there needs to be, and we're starting to see with some of the legislation, although i think it's really just the step of the eisenberg, targeted investments in this work force, to prepare them, number one, to prepare them, number two, to set a standard for attracting a pipeline. because in the -- you know, in the short term, we have to deal with what is, which is incumbent staff and getting new people in. the longer term, when we see the class act and come into play if five years, when we see the expansion of need on both the older and younger disability side, we need to get that

pipeline ready, and our institutions, our educational institutions and our investments are so, excuse the word, [beep] backwards, in terms of preparing people to do this, and supporting them with good wages, good salaries, good benefits, so at least creating a framework for that i think is really important. >> carol, what would you say? >> oh, dear. yeah, i actually -- i agree with robyn a lot. in fact, i think that the -- too often, the family caregivers and the direct care workers are perceived and actually can be not enemies exactly, but working against each other, and in fact, they are the -- they are the absolute essential partners in this, and we need to do more to make families and the direct care workers work better together. that's at the day-to-day, minute to minute level. i could never have survived 17

years of caring for my husband at home without the direct care workers i had. and i had 17 years, i had five people. now, that's i think probably some sort of a record, but it wasn't always easy, but if we worked at it, and we really need to do that, but i also think that we need at all levels, a recognition not just in rhetoric, but in reality, that the patient is not an isolated individual all alone in the world. some people are but very few really are, and that from every level of service that works with an individual, it needs to involve the family to the extent that it is appropriate and possible. we have already two programs that are federally funded. why can't we put more money in

to them? we don't have to do new legislation. just more money to the -- a family caregiver support program, which is incredibly woefully underfunded and the life span respite program. one of the queries on my article was, it was 2.5 million for the life span respite, and the editor said, this seems too low. yeah. right, it is too low, but it is what it is. so let's work to do with what we have, and then try to get people to understand that care coordination and integration of services is not easy. it's not something you can just say oh, we'll give you more money and do it. we need to figure out how to do it on an operational basis. it turns out to be fairly complicated because everything is so fragmented, so let's figure out the ways that it can be done and make those

accountable. one last thing, i really, this is my personal thing, why do we not hold hospitals and nursing homes and health care agencies accountable for the medicare regulations, the conditions of participation that say you must have a discharge plan in place, you must con cult with the family, you must do this, you must do that, give them so many days notice. when i brought this up in a meeting of providers, they looked at me and laughed. poor child, you don't understa understand. we don't have time to do that. that's regulation. we agrady to do that. why -- agreed to do that. why don't we make providers for agreeable to do that. they don't think it's important and nobody takes any account of that. >> ok. well, i can do soap box too. well, soups an, you asked about

what the next policy steps were, and i wanted to say that i think the next policy step is the community choice act. i think the class act is good. it will mean that middle class people will be encouraged to be prepared for -- you know, to take care of their long-term care needs or at least to have the long-term care needs subsidized at some point in the future, but as i said, half of the population needing long-term care services lives in or near poverty. i don't think that population is very likely to pay into the program, and in any case, a lot of people need services now. as long as states have optional and not required home and community based services under medicaid, they will do what's happening in california and many other states, in times of

financial crisis, they will cut the programs. they don't cut the institutional services or at least not as much, because those are required, so in health care reform is the community first choice option, which is a very much watered down version of the community choice act, but it's still an option, and option is not enough, at loss according to my -- at least according to my coco-authors. >> let me say two more words on what the option is. >> it's yet another way of incentivizing states that don't currently offer home and community based services under medicaid to do so. and you know, good, then maybe some states will actually do it, but as i say, it's still optional. >> all right. i also want to commend your attention to two other articles in the journal. one is actually an up close and personal look at the lives of

two direct care workers, the folks robyn stone mentioned, that's a report from the field by howard gleckman in this issue and also a piece on the debate offer the class act that was written by the foundingette tore of health affairs that appears as an entry point issue, that's a new feature in our journal which attempts to shine a spotlight on a contemporary policy issue, often one that current up on the agenda long after we conceived of the thematic of health care issues. let's open it up to questions or comments from those of you in the audience who would like to ask a question. introduce yourself by name and affiliation. that would be extremely helpful. >> i would like to pick up on things that carol and robyn spoke of. i'd like to bring the term

teamwork and teams into the discussion, that i think what we're hearing about, we call it care coordination, when we're talking about the inform ham care side, -- informal care side and we talk about needing to train the staff at all levels. but we need to not train staff in each of their own clinical expertise, but we need to train of staff in terms of how to do teamwork, that's the only way we do long-term care well, is through team. now the teams may change, members of the teams may change, depending on the needs of the patient, and it may be informal care, working with form am care, and we -- formal care and we know these combinations exist in the community, but we don't have teamwork and we typically don't treat -- train aides to do teamwork, we don't train nurses to work in teams well.

they typically pass meds in long-term care and not do much else, as the general approach, unless it's a very unusual place, so we need to think teams and we need to think about training beyond clinical training, but in terms of communication, prevention, and we need to bring long-term care up into the 21st century and bring h.i.t. in to all of this. >> robyn, would you comment? >> i totally agree. i mean, i think at every level, we need to understand what is needed and then we need to train and support and reimburse, and everything needs to be tied together. right now, the incentives are not in line with a system that we would want, and whether it's on the development of the work force side, or even, quite

frankly, on the split between institutional and home and community based services. so we definitely need to have a system that supports the concept of teamwork at the individual level, sort of a microcosm for the way that we want this system to work. it's a real systems approach and quite honestly, most of the training and education that people get does not move in that direction. long-term care, probably more than any other areas, because it's so interdisciplinary. you must deal with all of these systems in order to be effective, really as sort of a -- could be a model for how you develop an optimal system. >> what is that going to require in terms of the institutions training these individuals in the first place, the nation's nursing schools, others? >> well, i think probably the folks in the room wh who are frm

the various disciplines can speak better than i. i'm a licensed play nurse is what we usually call me, you because i've done a lot of work on the nursing side, but i actually think that most of our training is in -- is not in that kind of a direction. in addition to that, there is no specific foe campus in many places around the long-term care sector, so it's just the notion that somehow, by osmosis, the focus on the other parts of the sector will then translate in to long-term -- into the long-term care sector. the reality is, there are some defined competencies that are needed and there are some that are generic and we need to figure out what most of those are and in the under 65 population, there's almost no literature, except for some work that's been done on the support workers side. so we are a long way away from really having an educational and training and support system,

that provides the the framework for a system that we keep arguing we want quality. and it's always -- it always seemed crazy to me, if it's so heavily human capital oriented, that you wouldn't have the investment in the human capital in order to make that happen. >> great. another question or comment? let's take one right here. >> this is bob rohr from dmj. dr. kaye, you noted that the institutionalized and non-institutionedly, roughly similar, 3.9 needs, is there a qualitative difference in their needs that need services in an institutionalized setting as opposed to a home setting? >> well, i'm sure there is in ways that i can't tell from the

data. what i can tell from the data is the obvious fact that cognitive impairments are much more likely to be present in institutional settings. i don't know -- i don't know why, in particular, that makes -- that would raise the cost so much. so i haven't quite worked that out in my mind, but this is not something i'm an expert in. >> some of the costs are room and board costs. which you don't have in the home and community based settling, and you know, some of us have argued, in some ways -- someone gets to this, but we have an entitlement to nursing home care, which is an entitlement to room, board and services. we do not have a similar entitlement on the home and community based side. and the failure of growth in assisted living for example, for affordable assisted living has been -- there is no real investment on the room and board side. there is only an investment on the service side through the

waiver program, for example. so you're not really comparing apples with apples, and that's part of the problem. that big chunk of shelter is only addressed on the nursing homicide. and that's a big part of the cost. so if we're going to be honest about this, and we want to talk about developing our community based infrastructure, we need to think about the shelter piece in this. i mean, we tonight put into the cost of what people pay out of pocket, their mortgage, or their property taxes, or of whatever. but they're paying for the room and board over their head and then the services are publicly subsidized. so we really need to get at what the true costs are, i think. >> let's take one final question or comment back here, please. >> thank you so much.

my name is kelly horton, i'm a health and aging policy fellow and also a dietician and this is a very exciting issue. in most of the literature i have read, i never see the word dietician and we deal with people's basic needs, so i would hope that when you talk about work force in the future that you include dietician, registered dietician, and also just to know that we do have die at the time particular practice group that focuses on health and aging and there are several hyundai figures within that. we have thousands of dieticians working long-term care and we are trained to work interdisciplinary and we're also looking at malnutrition, so when we can see that someone is failing to thrive and point that out to the doctors and nurses, so we can be a team member. we're also dealing with the same issues of going into long-term care is not sexy, so a lot of our younger dieticians don't want to go into it. now he that the -- how do they

get dieticians to come in and go off to something that is more glamorous and how do we keep them, part of that is work force development, but also incentivizing them to become managers and leaders in the field. >> so we'll work on making long-term care sexy in the next issue of health affairs. i think we've given it a good first shot. all right. so what we've heard on the first panel is, first of all, from steve kaye, that we have a long-term care system out of balance. we've heard from carol levine that we have patches of a long-term care system but not the patch work yet, and we've heard from robyn stone that it's the people, stupid, and that the investment in the people is going to be a key part of what makes this system better. those are three terrific take-home points to start off with. thank you very much, to our first panel and thank you as authors for a terrific contribution. [applause]

it is my great pleasure to introduce our next speaker, who is connie. connie is the policy director for disability and special populations for the u.s. senate committee on health, education, labor and pensions, the so-called health committee. she has been the lead democratic staff person, the lead person for the class act. designed to help adults with severe functional impairments, obtain the services and supports they need to stay functional, and independent. she joined the late senator edward kennedy's office in 1996,. prior to that, she was of the senior policy analyst in the office of the assistant secretary for special education and rehabilitation services at the u.s. department of education. while working at the department, she was the director of the federal interagency coordinating council for children with disabilities, and also served as the liaison for the secretary of education, in all interagency

matters related to health and children, including representing the secretary of education's interests in the health care reform debate of that time. we are very fortunate that we have a new health care reform debate, we're very fortunate that long-term care is a part of it, and we have connie garner to thank for that and we're just delighted as all get out to welcome you here today. connie. [applause] >> thank you. thank you for very much and thank health affairs for making this issue and putting this issue and making it a priority in this debate around health care reform. this is a tough, tough uphill struggle, and i first want to thank everyone here in the audience who has worked so hard from an add slo advocacy, from a provider, from a health care point of view to make sure long-term health care support stays on the agenda for long-term health care reform.

i am not here to talk about an article, i don't have an article i wrote, but i am here to talk about a vision that came with a lot of work with senator kennedy that began in 2003, so i will disspell a little bit of this motion that we had a five year resting period, because that five years has been there since 2003 and i will give you a little bit of why senator kennedy felt so strongly that this was an important issue. and we had a trip up to massachusetts, i guess probably in the end of 2002, and it was pretty fun, went around the western part of the state and we did stop in a number of nursing homes, and we stopped at a number of hey existed living facilities, and one of the things that he came -- he came away with a couple funny things and one is a joke that he told and i'm not sure this is really true or a joke or a story he made up, but it was funny but he told me the story as we are driving into the parking lot one day of a trip he had made, a

political trip once with one of the presidential candidates around the state, that they had gone into one the nursing homes and develops it'sed everybody and the candidate went around, shook hands with everyone and when walking out the door, stopped to talk to three older gentlemen who were playing cards at a table towards the front door and walked up and they just looked up at him and weren't sure what he was staring at them for, didn't really recognize them hand he said, do you know who i am? and the one fellow said, no, but i'll tell you that lady that runs the front desk, she knows who hall of us are, she'll tell you our name. and he thought -- he thought that was the funniest thing and there wasn't a time he told that that he didn't just break into laughter, whether it was 2002 or later on. but we had -- we had a fun trip, it was a very eye-opening trip i think at that point for him, because he had watched very, very intently his mom struggle and how important it was for her to stay up in hyannis port as

she went through the end of her life. coupled with that was his absolute appreciation for those under 65 who had limitations and that's the whole core piece of this paradigm that was put out there as a new idea that you have to throw it out there to see if it works or you'll never try it in trying to see the long-term development and support systems really for individuals over 65 as well as under 65. and we looked very carefully at the value of of that. we looked very carefully at the marketability of that and we looked very carefully at the notion that we will never reference this program as long-term care. it will always be called long-term services and supports, and there's a reason for that. and it takes me back personally and i have a very big personal interest in this, not only for the seven kids i have, but for the one that i do have that is disabled and so i know what that caretaker role is. i know what it's like to not be

able to get here until 9:30 a.m. because she has no transportation to work, because we don't have the services and support she needs to get there and i know also, as a practicing nurse practitioner, how important the staffing issue is and i think robyn is absolutely correct and it goes all the way back to not just the philosophy of where we are in this country because it's not the same in european nations and it's not the same at all in terms of a value system taking care of your own. the other piece is the educational system and i can remember the very first time in nursing school, when you go in your different rotations when i went to the nursing home. the very first thing you get hit with is a brand new student nurse walking in is how awful that particular rotation is. you hear it before you get there, so robyn is right, there's not a value on this care duty. you walk in and everyone says, well, you got the bedpans over here and this is the water thing. well, i had been a candy striper in philadelphia before i went to nursing school. it was actually the only job i

ever got fired from and the reason was, i didn't have any brothers, i had four sisters, and at night when i would come there after high school, i would fill the water pitchers. i didn't know the difference between a water pitcher and a urinal and so i can remember the night i went, filled the urinal with ice, and about 10 minutes later there was this horrendous scream that came out of this gentleman's room and when the real nurse went in and we saw what happened, she was like you can't do. it struck me so funny, first of all, i didn't know the difference, never had seen one, the whole thing struck me funny enough that that was it, i was at the dry cleaners the next week with a new job, but i remember that any experience that i had in that arena, it was never positive. it was negative, always had a shadow over it, it was almost like what happens to p.e. teachers when they get stuck with the special ed kids. that's all the p.e. cast, the teachers don't want of to, so it's the same kind principle, so

when sarah kennedy and i went around, we talked about that, so it was a flip-flop conversation almost between what the vision was that his mom had had for rose mary and what that meant at a time when that was not the way individuals with disabilities in this country were really looked at. people with functional limitations were looked at. on the other hand, what he saw, his mom struggle and how hard she struggled with the dignity issue and it wasn't about nursing homes being a bad place. it was about the better choice for her. about wanting to live out her final days in a place that was familiar, that made the memories for her. just like everyone i see in the hospital, they don't want to stay there. who is going to cover christmas eve and christmas day, worst, worst, but when you work christmas day you feel like you did it for a reason and you made a difference. but nobody wants to be there, they want to be home, they want to be with what's familiar to them. it's not about pitting nursing homes with what's familiar to them. :

>> it doesn't matter how old they are. it doesn't matter whether they are in the continuum of life that if you're pouring off and you are disabled enough you can qualify for medicaid. if you're really disabling of you can qualify or the nursing home benefit which doesn't give

you a continued choice. it gives you one option. so why were we doing this quest that took it all the way back. that's why i asked you to think broadly what we do in this country, we took at all the way back to what i really do in nursing which is. i go into that delivery room and the gerber baby is at the baby anymore. there are families turned upside down. what happens when they leave that nursery? what happens when they go home? what happens when they can't get an education, they can't get a job, a house, they can't even die in their own right? what happens then? what happens to those families you're speaking about? that young person becomes an older person, and they have the same functional limitations. they just happen to be a different age. what do we do in this country? we set a public system would have to be poor and you have to be significant, you have to hide your assets under the mattress. you've got to do something with a grandmas money so you get it and they don't do that so we

have done is. the question was how do you turn that around? particularly when we look at disability, the amount of tax dollars that goes into special and is a lot. so what happens when the bus doesn't come any more? what happens, the first thing in the schoolbag is the social security, it's not the job. why not? there's not enough support for people who have young people will disabilities to get the job. now you are facing a crisis of a large number of young people who are going to be -- going to be living with the implications of the autism spectrum, more than you even know. what do we have for them? medicaid and socia social securd watching tv. it should blend together. so one of the pieces, and i'm putting a lot of emphasis on disability because i heard an awful lot today that built with more of the aging population.

for this particular piece of the health care, and for us, it's not about the. it's about the functional limitations that any individual has. and how can you merge those populations and the investment in those populations together so that you can create as a functional system that works for all of us. there's not a person in this room that can guarantee who they will be or what they will look like 24 hours from now. you just can't do it. and somehow, we haven't internalized that as a value system in this country. that's all the way from the education, the providers, the value in what you put your money. the value in a long-term care system. and i've learned over the course of 2003, particularly for health care debate, what a tough issue this was and is, continues to be, to get on the radar screen for a variety of reasons. it's not a sexy issue and it's not global warming, and it's not anything anybody really wants to look in the mirror and say, this is going to be me. short of dying, this is going to

be me. that's what i think spent part of the hardest part of the negotiations that we had. so what we began to do was look at how could you create a program that was built really on two principles, voluntary -- we had to keep it a voluntary nature. and try to make it as close as we could to 401(k) opt out and pulled his. and how could we make it simple so it wasn't complicated and do a structure that really created a cash model with your choice being what was important, because it's your money. it's not the taxpayers money. is your money. so it's different than a poverty based model. this is more of an insurance-based model. first groups that we brought -- we pulled risked. these are the principles, the policy objectives. we wanted to work for people under 65 as well as over 65 and we want the eligibility to really be about function, and we want individuals to have the resources they need to meet that piece of it, the functionality piece of it. even if that means being in a

system living in needing to have the extra kind of support that you need to function in your day there. or in the nursing home if that happens to be where you need to be. i agree with robyn. it's not about the bricks and mortar. it's about what's inside those facilities and how to make them a little bit more entrepreneurial. powerhouse town apart and i went on a trip around the tri-state area and we visited different nursing homes. when we walked in i would say to the nurse, i would like to see your vending area. we we just want to use your vending machine will quick. we do this on 12 plays. we walked to the vending machines and the coax in the diet sodas that were in that machine were $1.50 i can. that is more than the amounts that a person has that in the nursing home is dependent on medicaid. so we had a new mantra for this bill is rebooted along and we called it a diet coke go. because we want to make sure the people, if that's what people have to be, that they had resources so they could go down and get a can so they could have

blue and pink air into one of. we didn't see any of that. there are some real good entrepreneurial models that are beginning to spring up that are actually fun, and hopefully, this will contribute to that being able to progress. these are the kinds of pieces that we began to look at. we come back again to the functional piece, the cash model helping it. the way the bill is structured, and this gets very confusing to people. there's a difference between what the snapshot in time was, meaning the amount of money, the amount of adverse selection predicted, the amount of participation rate, the amount of degree of disability that is in the scoring of the c.l.a.s.s. act. they took a 2013 snapshot in time. they scored it at $75 a day. they took it out 75 years, and they have different variables that they looked at in terms of adverse selection purchase a patient and degree of disability. do we count on that? is a snapshot in time.

what's important to remember about this bill is we try to construct it in a way that the pieces of the construct flexible enough that the administration or the administrator of it can manipulate this triangle to the point that it works well to do two things. one is to maintain solvency, and the second piece is to get a respectable benefit that people will agree with. i believe $75 a day is a respectable benefit. however, what's in the bill is that it can be never less than $50 a day and the administration needs to come back with a scale that's graded against the functional limitation. $50, 75, 100, 150 up against, two, three, four, five. so there you see this is what it is. that's not the case. what you're seeing is a reflection of the snapshot in time that cbo took. that's kind of a we have to work with now but i wanted to make sure people are clear on that. it is at 50, 75. there will be a range in the range will be according to what the functional limitation is, and how that model is

constructed. so it's scaled to the steps. the next policy objective that we had was about providing services. that was always a really big piece. one of the big fights we had in the developing of this bill was family caregivers, and could a person reversed their family member for the services that they would provide. that caused a huge upward i will tell you for those of you committed to family caregivers, huge, huge. we had discussions with unions about how to do with that and we had discussions with members. and i can tell you, i can tell you, there are people who just don't understand. they are not negative and they are not dumb. they just don't understand. i had one senator before the senate bill say to me why do you want to give money to your mom? she is there. why do you want to give money cash but it was hard. biting the inside of my cheek. i said because she could be working. she could be a taxpayer that she could be contributing.

and i said, the other thing is you are here, your wife is home so you don't know what this is all about necessary. you in particular. then he kind of stopped. but there was a genuine question as to why would you want to pay a family person, your family. this is not about paying. it's about giving them resources that they otherwise could probably get in other ways and make the system work better. so that was not an easy piece to get in this bill. but this bill doesn't allow you to reimburse your family caregivers and we think that's important the other piece that we put in here when this all rolls out, where do you go? now there's a protection and accuracy peace in this what people really need the help, sorting out what they need and where to go. almost like a navigator will. it's controlled by the protection advocacy systems that are located in every state governor's office. that's important we think for us so people don't have an abuse situation that turned up at the other piece that we said was we don't want to create new stuff. we don't need the centers of

social security to do the evaluations that this is not about a five step process of social security but are you poor enough, do look like you'll die, do you have an inability work? we don't need that. what we need is documentation that you have what you have that you have that functional limitation and a check off to make sure it continues because it's your money. this is not -- when people say why did you put that since then, no taxpayer dollars go towards us, that's how confident we are that this program will be self sufficient on its own. and it is your money but it doesn't need the federal strings attached to it. so that was the other piece. we said let's use existing agencies. you will see in the bill, if you're part of the independent living system you should use the independent living centers. if you're part of the aging community, you should use that. the combination of aging and disability is perfect. we don't want to create new things. we want to use existing mechanisms that are out there to pull together because there are other resources.

when i did some early intervention for younger children, went to delaware on that because nobody was doing anything. delaware has the highest rate of drugs coming into the coast of delaware has the highest rate of infant mortality. delaware has the highest rate of breast cancer. when i went to the governor's office to talk about the value of bringing things together, said make a visit to the house and you got the pregnant teen over there that can be an early registry, you have a mom who hasn't had them mammogram. you can bring all that together witches are reasoning to say don't reinvent the wheel. use the existing bases out there already. the second thing is again, robyn is so right about the workforce. i remember when i first went back to get my masters in nursing. this was great. in philadelphia, and i wanted to do long-term care of kids with cardiopulmonary and their logical disorder. i go to the nursing person at a very prestigious university in philadelphia and i said i don't -- i don't want your track that

i want to create this different thing. which that's a problem to begin with. i want to create something new and different. doesn't make any sense, going. doesn't make. long-term care is nursing a beer to its older people. you can't put that together with kids. i struggled with 18 months with the conversations to finally were able to get a curriculum put together that recognize that young people, and this was pretty little kids with brain tumors more than anything, really do have long-term services and support needs. and that long-term care doesn't have to be about just 65 and older. so we were finally able to create that. that was the first thing. the second thing, i did tell you about what it was like the first rotation in the nursing home. the curriculums in these nursing schools from the curriculums in terms of building value around a personal care attendant are not there. i have argued even as close as fairfax, virginia, where there's an icf mr, which is one of the medicaid institutional places

that is absolutely three blocks from george mason university which is out there, why are you not bringing the special ed students and the nurses over there? why don't you re-create this thing to be in the neighborhood and why don't you set up a 7-11? there's a lot of individuals who are functional, because of the way society has done things they get locked into these sizes and they are there. but you could kill a lot of birds with one stone that i'm still working on the governor's office in virginia about thinking about that. so that's another piece of it that we have intended the other policy objective of this is how do you impact medicate any more positive way? what can we do so that is, and you will see this is first disappeared nobody takes medicare away in this bill. in fact, anything you get from this particular program does not impact your eligibility for ssi, medicare or medicaid. that was big. that was big because we don't want to go into the poverty

model again in order to get what you pay, on your paycheck for. so we went that route, and how could impact medicate? what we said, if for example you have four or five adls, you're probably going to be at the $100 at a level at a minimum. that's $3000 a month. it for some reason you need to go into a longer term care facility, if that happens to be what works for you, and that's where you are and the cost is, let's say, what's the average? $7000 a month. this pacers before medicaid pays. that's there if that what works for you because they still are providing you a roof over your head and food and someone there. the qualities of another issue, but that is how we felt that should go. the second piece is, if you access the medicaid and you wind up using it as a home ingenuity-based option, and, and the package of options in the state really include the tough stuff and the tough stuff is

going to be assisted technology, personal care attendant and transportation. those are the big. if it includes that, then you get to keep $1500 over 3000 because you still would have been that degree of eligible in order to trigger it, and in the state should be able to get 1500. used to need 1500 to do other things you need in your house. this program does not take the place of acute illness and injury insurance. unita. blue cross blue shield, adding, medicare and medicaid, whatever injury is this is on top of a. that's not necessary going to be medical all the time. so that's how we tried to weave this along with some of what was in the last era which was the reconciliation bill that try to encourage states that didn't have money behind it to be able to do that. the last piece that we tried to do was say to the long-term care insurance industry, and we have said this continuously, this is where senator kennedy has been all alone, this is not meant to

put the insurance industry and a crown that situation. this was never meant to put them out of business. we get a lot of exploration of where the long-term care insurance industry has been over the last 30 years, where they are right now. they need a jumpstart in order to work. this program is not the end-all class act and the best case and it would be if this could love together with long-term care products that are out there. we have argued with him. there's the five you waiting. we had the fighters and afford absolute reason. that was to make sure the government really did get as much which is a patient that they need. that injured two and three they could look and see how many people do have in here before we go forward if we have promises we can't keep. that you could frontload with incentives, the year one and two. so that you really knew what was going on so that if you get to pull the plug, and this is why we have pulled the plug link in a. we have language in this bill you won't see anywhere else. 17 years, i've never had like what where i said no federal

dollars. you can pull the plug. that's how confident we are that you have to give it a shot. we believe that people will go for this. we do think they will want this and they will want the flexibility, and you will get the risk pool. so what we try to do is say that's what the five years was for. if i'm working and i will take any insurance folks in the audience, if i were working for the long-term care, i would be real smart about we crafting wraparound products. like the europeans have been. somebody has got to fill the gap on that by just a guy will do the product that does the five years because there's a whole lot less risk to be covering that first five years then there is liable to be in in. or i will do a wraparound for people like connie who has seven kids who i want this because this will help me all along. at the point where i may really be significant and need to be in a nursing home, i need a three-year igloo of a product that they have. this won't help either. that will take the edge off. and make it so it's affordable. and not have us be in a situation which is not the fault of the industry.

it's just what happens when you don't have the risk pool of what happened with the federal plan. you know, a couple months ago. there are ways and we will continue to say this is about loving with the insurance industry. we want to work with them, sit down and figure how to make these models much more similar to what we see in france and germany. and they work. they have increased their market share 25% times five years in the european countries by doing something like this. so although it's been a struggle we will continue to say that's what this has always been about. for that reason, there are lots of different flexibilities that you could do. in the last thing i would share with you is the objections to the bill. interesting to watch if i back up and look at this whole thing, the obsession with the financing of this. there has been so much focus on the financing, and have the time you have to come is it about the financing because everything is projections. you don't know how many people will sign up. i don't know. you don't know what the degree of visibility like 20 years in

a. it's going to. i would hope it would or else we need to go over to nih and find out why 30 years and that there's a problem with stuff they been working on all these years. so we don't know what that degree of disability is that you don't know what the participation rate is. you don't know what the adverse selection rate is. i had a conversation on the federal level was kind of what happened with long-term care program? not to do with who shot down but to try to understand where the pieces that go on. what i was told was, it was too much perseverance. people that we thought were going to die didn't i pick people that we thought would drop didn't drop it. so that was fine. the point of the matter is whatever the projections were, about adverse selection, whatever the projections were around rates of disability happen to be a lot different. and they were alive. they weren't supposed to be by way of the actuarial work. so none of us know what this is going to be. everybody can have all the concerts they want until you do it you're not going to know what really occurs with the kinds of

areas that is going to bat in the out years of the program. that a lot of rovers on the financing model that i always wanted what that is about, whether it's financing or weathered when you get below the financing and you talk about what that 24 hours is like for an individual who has the elderly mob with him, or was that 24 hours is like for the individual who has a child who's significantly, significantly has something on the autism spectrum. once that day like for them when they can't get a haircut. i'm lucky that our daughter really is quite functional that she significant that she's quite functional compared to some of the other families, and the struggles of what that's like to get up every morning. budget makes you when you get below the financing, have to think about what's that is like and think about what it needs if it's going to happen to you and if you have to do with a. i think people get afraid of that. some of the things that are issues, but again, a lot of it is the financing is going to be can you keep it meaningful

benefit and keep it solvent long-term. doesn't work, pull the plug. or maybe we constructed a giveaway. adverse selection, you're going to cover everybody? you're not going to rate people? you're going to cover everybody know matter what they have? our candidates were going to have a risk pool big enough where going to be able to absorb that and we don't have the overhead cost for at least this program which is only a couple of long-term care that you have any industry because there's things you don't need to do with the government, that they need to do. so we don't think that's an issue. as far as the one place where i think -- we didn't fall short. we made a decision on this because you had to cut the mustard somewhere. is that it does attract the middle-class population. because we had a financing piece of it, we had to pull that it. we have to get the money for the premiums. however, this is a big piece i don't think people think about it you have to population to get this for $5. there's a reason for that. the one population, kids in

school. and the reasons we did that was too full. one was to make sure that we do something to raise the level of awareness with young people that you can't guarantee when you go on that beach week that you're going to come back. you know all the beach weeks were spent stories that of an ethic that you don't know when you use that boogie board with you going to hit the front end of it in the same and that it. and that you need to care about the fact that you can't predict who you are, even though you're invisible to most of my seven kids are all in that range, if you stay up all night waiting to hear the car come home in the driveway. but we have an obligation to at least raise that issue, the same when we raise it around the ability to get control, whether you get hiv age that we had that. so we put that in there for the students to get that for $5. if you think about that, they have done their best and buried by the time they're out of school. so for you, a parent, i think it would behoove you to pay that premium for them if they can't

pay it themselves, or pay some of it. because you're in the window where they're not going to get the full protection that you would normally get under the eye if something happens. so that's a phone call home. that's what that is. that is a phone call home during the most, i would argue most of all a bold decade of young people's lives. so we feel strongly about that. i think people forget that they have done that vesting period. to do we think they will stay in? you that we do. so that helps you with your health risk pool. the other group we get in at $5 for individuals who were under poverty and working. because they're flipping on the sensor. do i stay under the radar screen so i get assistance or do i try to continue to work forward? and we gave it to them for that purpose as well, for $5. so the one part of the construct that's kind of got, i think we have to see, you've got those folks covered on this in and

you've got middle-class folks covered, and then there's a question in the middle. that's going to be what the premium looks like. that's again, you don't know it. we don't know it until we see who is in the pool. that's the kind of issue that everybody's actuarial everything. what's interesting is with doctor ken actuaries get everything what is different except the cbo kaifu comes and says you need to know that all this is projection. nobody has done before but nobody is really going to do. all we have to work with his current existing data which is coming from the long-term care insurance industry which is having their own issue to that's our frame of reference that's out there right now. hopefully, we will have a new frame of reference. and in the last issue is just to say that we felt very strongly, and we feel it. when we talk to parents, when we talk to grandparents, when we talked to young people in school. do they think this is important? they do. a lot of this is tied up in how it gets marketed. i wish it was somebody was that when i first armed with the

government, back in the '80s, i guess, the end of the '80s when i first got out of school, they have the fear we go and sign up for your benefits that there's all the stuff lined up. the fly for long-term care said long-term care and it had an older woman sort of sitting there any norse garden and all that. did that register with me when all my kids were 12 or under? that was not high on the priority list. had that flyer had some religious hell of a ski lift and colorado. i may have thought differently about that. i didn't get any connection there with the fact that this is about you getting a functional limitation, not necessarily age-related. so i would argue that in marketing this together, both public and private insurance needs to be marketed in the way that it gives those messages out. we have done a lot and you will save more when it comes out of conference i think on the issue of marketing it and not just marketing this. marketing this for what it is, which is not everything. but also working on a marketing

plan on what the private insurance plans as well. this is not doing part f. of medicare. that's not what we want to do your. we wanted to use existing resources. we wanted to jumpstart a pretty much flat market or the other concern that has come up that we've, this disability insurance that it's not. disability insurance is income replacement. this is not about income replacement. this is about money that you need for over and above your income that you didn't expect he would have. we will make it clear in both the marketing and education piece, as well as in the light which of the law, if it passes, that it says it is clear that this is not disability, made to either replace or displaced disability insurance. where are the employers? we don't know that we will see what happens but nothing that precludes them, nothing, from perturbing to this if they want to. there's no mandate on employers. but they may want to and they may not. but that's their choice that

there is nothing to preclude them. so that's kind of how we got two really are. it's not an article. it's a new and different idea, bit of a vision that it's important to senator kennedy and i think what's most important, which i have to tell you, the only reason i continued to stay on after his death, because i was with him for so long, is that throughout the end of his life, there were frequent times when he would call. and all of a sudden that it was real to him that it wasn't about his sister anymore and it wasn't about his momma did he realize how important it was that they caregivers that came to his house every day and allowed him and got him up and let him have what was most important to him as he went to the end of his life, which was to get on a sailboat everyday. but it became more of a real issue to real people to him when he actually experienced it. the final phone call that at least i got from him, not too long before he died, was an

absolute this has to happen but somehow in this country we have to put in the hands of people what they need in order to have the choice and decisions about how they want to live, but also how they want to die. with that, that's kind of the background on how we got where we got. we will see what happens. you give it your best shot, so we will see. thank you for having me. [applause] >> sounds like we have time for some questions. >> yes, and he. questions for connie and please identify your name again. [inaudible] >> what happens if somebody is in for, let's take a four years and they drop out and then they want to rejoin? is it advantageous for them to sort of if the premiums are

going up, to wait and see if they come down? or should they stay in, because they would be age rated if they dropped out? >> we have come and you'll see again in a final version of this, spent an enormous amount of time with omb, the treasury department, hhs, around what they should look like in terms of that. some folks get very concerned that people can make the system. you know, they will get in, get out. so we have tightened up a whole lot in terms of when you get in, how many years credit you can get if you get out and get back in again. that's all kind in the works are being worked on right now. it wasn't so much to get the score better. because again, it's going to be what it's going to be. in the end of the day, it was one more to make sure that the program is responsible and accountable to the people that pay into it and that you don't have somebody who pays him for four years, or five years, and gets out. the bigger thing is if you pay

them for five years, then you continue to pay your premium, then you get out. then you get in, then you get at. that's a big problem. we spent some time on that. it's not quite finished yet, but the issue is an issue and we're going to address that. >> let's take a question in the back, please. >> hypericum erna gaskin. very excited to hear about paying family members, and we have a clue on the research about people being interested in having assistance with payroll. any thoughts about that? >> again, people don't look at this part of the bill at all for whatever reason, but there is a big piece in there about help that is available, kind of the navigator thing, for family members who are essentially working with someone who can do it themselves. and also for the person that there is a very big piece in there. the other thing that's interesting, this will be

interesting to see how this shakes out. one of the pieces we have been there, because it's important for medicaid as well as this as well as frankly, any of the cash benefit models that are out there in the private industry, who are the people that are going to do the care? who are you going to pay? where is the cash going for the care? what was asked in the bill is that states, when they submit their state plan for medicaid, have to do a survey in the state to try to get a sense of what is the work force look like, based on what they are offering. you can't keep doing these things will be expensive if you don't have the people to deliver the care. there's a little bit of a back going up from that from those who would have to do the survey. and i think will probably push them back real hard on that. because that's an obligation that you can't be offering people a benefit and say here it is, but there's nobody you can get to do it. so we really want people -- we want a medicaid system to take a good hard look. this is even with community choice. you need to know who is out

there, and we need to know that because that tells us on the other end, should we do something in the education arena and funded some programs and community colleges and colleges for this. but you can't make the cases to the state government unless you say you've got a big way for out there or out there or a big program out there, you don't have any people, and now in the southwestern part of virginia where you really need it, there's an aging population, you don't have anybody trained. you need to have that to make the arguments in arenas that are outside of health care to be able to support the stuff. as far as the navigator peace, we have that. this other piece is interesting to see how much resistance we get to that. we will see. >> let's take one more question here. >> bruised from the s.c.a.n. foundation. i wanted to start first off i thank you for coming and speaking today and we really appreciate your comments. really acknowledging this proposal for what it is that it is generally transformative. i hope we all take a moment and

understand that so much of health care reform has been about particularly on the long-term services and support side, continued very important, very important, but incremental optional sort of steps forward. this is the one piece that i think really has a transformative quality to it because it brings a fundamentfundament ally new model to the table. which is highly needed if we're going to evolve as the population ages. those who are younger with disabilities have new venues for service. with that in mind, two questions. one is, what do you think are the strategies to help the long-term care insurance industry see the value of self product because that is an important piece of the transmission? the other question, which is a narrow one, people change jobs over time. so at the end of the day if i start paying in with employ one, but i change jobs, do you have a

sense for how managing my benefit follows me, kind of before one question? if i do have a one and every one of places i'd been or is there a way to consult? >> they are working on how that would operation and look for us. so we will see what they come up with. that was one of our questions, was that. and the other was how to simplify this in a way that an employer doesn't have come if they choose to do it, doesn't have to collect so much data on mr. x. and indifferent one on mr. y. and one of mr. z. how to make that a little bit or simple, without making it a federal, like a total federal think that we didn't want to do the. that sees way to go. the easiest way to go is make a whole federal plan but we didn't want to do that because, again, kennedy's commitment was your not going to put people back you've got to do this in a way there's a place for everybody. so we do have the treasury working on the. we will see what happens. a lot, this is a framework and this could be good or bad that we try to write it broadly

enough that he was flexible enough to adapt itself to what the need would be. in doing that flexibility, it's always the devil is in the detail and its target but it's still the better way to do it if you're going to be able to commit to solvency. and then as far as the gap on us go in the insurance industry, there are definite include i think in the statutory language that i will go back and look at the. on all the advisory pieces. my suggestion, if asked to the administration is going to be the very first meeting have, you have all the stakeholders at the table. somehow this has to be a public-private partnership. with a little bit of oversight, it should be fine. they need the help. we need what they have to offer as well but it's just hard getting people to kind of say, okay, and do it. i think that would be my suggestion, at least. >> connie, to close we know that the conferees on the nonconference committee are meeting even as we speak your. >> is to?

>> to begin to discuss these things. what do you think the odds are the class will survive the flood that what you think the odds are the final bill will be an active? >> that stuff. that's like, you know. that's like go to have a camera on for me to answer that? i don't have any questions c.l.a.s.s. will survive. i think it was that it can both build. the focus always is on if you have something in one go and not any other, then what? does that become the thing you threw over the side of the boat. i don't have any reservations about the fact that c.l.a.s.s. will survive. what we're being very careful to watch, however, is the structure and the basic underpinnings from a policy objective of this doesn't change. because this wasn't about getting a freelance ticket to the administration to say craft whatever you want. is written very flexibly so they have lots of room to move, to make it work for real people. but this is not about here's a ticket to just create something new and different. we are going to be very careful to make sure that the constructs

that are in your don't get pulled apart. and the expectation that the real people, the 275 national groups, that's a lot, of providers and people and all kinds of different groups that were on board, were not sold a bad bill of goods in terms of what this is bigoted you personally going to keep up a pretty good eye on the. as far as the big bill, i don't have any idea. i just, i really don't. we believe it will go. we believe it should go and we think it will go at the end of the day. hopefully, it will be in a form that everyone will benefit from. and it will do no harm. as far as the long-term goes, again, i've got the kennedy perspective here because the years we worked on it, but he was so clear. and the member snowe this in terms of the classic stuff. that if you're going to do and i remember the first meeting that he was at. if you're going to do health care reform, it's not just about a cute illness and injury. that if you don't give some

prevention, if you don't give people coverage for acute illness and injury and if you don't give them what they need to maintain their function, and prevent them from slipping backwards, you haven't done anything. because they are right back in the front door of the health care system. so the long-term care please is held in our eyes. and it's been an interesting, as you point, half of the insurance industry believes the rabbi did is a good and the other half-dozen. they are split philosophically about whether this is a disability or whether it's, whether long-term is a disability or if you're going to do health care reform you do a cute illness and injury and what people need to maintain their function and prevent them from slipping backwards. that's different than coverage expansion. so decide what you are doing. and i could remember that, so we say we're doing health care reform, and i believe that's as will be in if we can control it at all. >> hearkening back to the store you told about senator kennedy

and a guy who said there is a lady at the front desk who knows everybody's name here, i have a feeling that even at a point when a lot of us in this room are in that place where we are hoping there's a lady at the front desk reminds our name, they are actually going to be a lot of people out there who remember yours. thanks very much, connie. >> thank you for having me. [applause] >> we are not going to adjourn for a quick 15 minute break. please added herself of the amenities, chance to return some blackberry messages, whatever you want. we will be back here in 15 as for our next panel on places and care venues, where people obtain care. [inaudible conversations] [inaudible conversations]

[inaudible conversations] >> this discussion on long-term care services currently in the break. they will return shortly for panel discussion on improving long-term living venues. for those who need to. we were very martial pressers at harvard medical school. also hear more about a provision in the senate health bill that would create a new long-term interest program for the elderly and disabled it they will return shortly. until then your phone calls and comments from this morning's "washington journal." >> at this point i want to take a look at an item that's been reported on my calendar sporting. he writes about politicos brown who has posted an 11 page staff comparison of house and senate health reform bills, and you can

find them online. more than 50 topline differences need to be resolved from the amount of taxes levied to the minimum benefit package offered in the exchange of. today, speaker pelosi will meet with house committee chairmen to start settling as mac start setting the parameters for negotiations with the senate. then pelosi and house majority leader go to the white house to meet with president obama and vice president biden. senate leader reid and dick durbin will call in from their home states. white house aides have sought to downplay the challenge of reconciling the two bills, but the chart is an unambiguous reminder that a bill signing is still a ways off. and a series of politically unforgiving and party screening decisions await the democrats. so that's what we are going to be talking about for about the first 45 minutes. we're going to go for the feldberg are first call comes

from new york city. daisy on our lines of democrats. good morning, daisy. daisy, are you there? all right. let's try fort smith, arkansas, on our line for independent. >> caller: morning. >> host: good morn. >> caller: you are looking chipper this morning. >> host: thank you very much, jeanne. what do you think about the plans that the democrats have to sort of bypassed the republicans and trying to get this health care bill to the president's desk? commack to work, i don't. and i looks like a little bit further. >> host: please do. >> caller: i am a child of an arkansas political family. and if you remember the term yellow dog democrat, that is my family. but democrats of today are not

the democrats of 30 years ago. and a move they are pulling is a complete thumb your nose at the american people and everybody else you're going to like a type attitude. and they are not listening because i can tell you in arkansas, we've got better than 60 percent of the population dead set against this bill. i've been reading myself because i've got passionate i got a hold of the cbo, and manager's amendment and i got a hold of the actual bill itself. and i found at least three items that in the first page and they go right directly against the constitution. >> host: jean -- >> comic if you look at the back we have 13 attorneys general already looking at the constitutionality of it. >> host: and the democrats decide to go ahead and bypassed the republican counterpart, do

you think this will have an effect in november of 2010 when folks in arkansas are up for reelection? >> caller: let me tell you, it's already having an effect. as a matter fact i can tell you he is going to be ambushing this week. and he appears as she is making. the activists roll here in arkansas is very strong. better than 60 percent of the population that i'm aware of, there's only one way to put it, and they are completely upset and this at pledge. >> host: let's go to new castle, delaware. gym on online for public and. good morning. >> caller: how are you? >> host: i'm fine. what do you think about this plan that democrats may bypass republicans? >> caller: well, when lyndon took the power in russia he bypassed the means. when hitler took power in german, democrats nazis, they're

all the same. democrat is the only chance we have a chance to take back america. people get out there and vote the right way to standardize all i got to say. >> host: jack in chattanooga. your next. go ahead. >> caller: i'm telling obama that he can go on and reward those people that were on that plane that helped put out that psycho with, that blow him up and didn't talk about putting him in a military court. >> host: jack, we're talking about health care right now. let's go to grosse pointe, michigan. jesse on online for independent. >> caller: good morning, rob. >> host: what do you think about this plan that democrats are throwing out? >> caller: i think it's great, because you know the problem i think with the republican party, they're going to have to, their record when they were in office, they just don't care about

people, the party. and i think the president, he's educated, he's strong. is a chess player like i am. and he doesn't jump up and holler when something happens without getting the facts. you know? he examines the situation and makes intelligent decisions. and i think the country is so badly in need of health care reform, i can see -- you know, the project, what we're fighting now now is to make sure that the republicans don't gain seats in the senate. we have to start working on that from an intelligent angle. do you want the party of know, back in the record? they can't run on racism and conservatism, you know? >> host: are you concerned there might be some backlash though in november? >> caller: well, the american people are smarter than the

pollsters give them credit for. i don't think there's going to be any backlash against health care reform. i don't think there's going to be a backlash against a president standing up to the pirates. standing up and defending this country. doing what he's supposed to do. i think he is strong, intelligent president. and i don't think, when it gets down to dealing with what's best, what's best for america, i don't think racism, conservatism, all these things, that were born in the south, i don't think they are going to have a bearing that i think obama is going to be looked at for what best for the country, reforming health care, protecting our borders. and doing the things that america expects the president to do a. >> host: let's leave it there. more from the article in the baltimore sun. these officials said there are no plans to appoint a formal house senate conference

committee. under the customary format, a committee chairman is appointed to preside and other senate senior lawmakers from both parties and houses participate in typically perfunctory public meetings by the meaningful negotiations occur behind closed doors. in this case, the plan is to skip the formal meetings, reach an agreement, then have the two houses vote as quickly as possible. a 60 vote senate majority would be required in advance of final passage. quote, i look forward to working with members of the house, the senate and president obama to reconcile our bills and send the final legislation to the president's desk as soon as possible, speaker pelosi said late last year as the senate approved its version of the legislation. back to the phones, and myrtle beach, south carolina, on online for republicans. go ahead. >> caller: yes. i actually disagree with the last caller. i know for a fact that the

health care bill and the health care reform, the democrats are trying to push, is going to completely affect the senate and congress. in the november elections. the two parties that were discussed are forming a new alliance called the patriot caucus which is going to be for him in april, on april 15. and the health care disparity that our country is suffering right now is going to be completely -- is going to be completely worse than it is at this point. if we are forced to pay for something we don't want. the voters will elect leaders of our country in november of next year, according to this bill. >> host: if you had a chance to read either versions of the health care bills? >> caller: you know what, i'm going to be completely honest and tell you know. and i'm with everybody else that's in congress and sent as low. there's no way they have read every single sentence that i have read parts of it, and here's the one part that i know.

>> host: okay, ab out what i am speaking of right now. what our health care reform needs is what the government has right now. and that's transparency. and the health care bill does not form that. how i know this is because there's nobody else, along with our sin and our congressman, that have read every single bill. transparency is what we need for health care reform. not being forced into a government run health care system and being a former nurse, i would say as anybody thinks this health care reform is going to completely make our country healthier, they need to go spend a day or week in a va hospital. talk to some downside of this country and see how the government run health care happens for them. or talk to a mother, a working single mother on medicare right now, see how long it takes her to get in, or how long it takes to get into see a doctor. or actually how many doctors accept government run health care right now. because they don't get paid that if we reflect and go back to when the automobile industry

started going and the government stepped in and they said you know what, we're going to go ahead and give you $4000 for every clunker we pulled in, ask how many car dealerships out there are waiting that are still in business actually got paid for the. >> host: we're going to move on to bill in edmond, oklahoma, on online for democrats. go ahead. >> caller: i'm so glad i had the opportunity to comment after this lady. i can hear your side of it because i got my tv turned down. >> host: and we appreciate that. >> caller: well, i just heard that so i guess you were not talking. my ti guess is a little behind you. yeah, your mouth is moving out and i'm not hearing sound. so i would just go by what's on the phone, i'm sorry. anyway, the nurse made several comments, which i think suggest that maybe she's got a problem with the present administration that goes beyond health care,

you know, talking about the clunker program and stop. a nurse isn't in the administration of a hospital, doesn't pay the bills. so i don't know what good it would do to be on her job. my feeling is to address what i understand is the main question, about democrats and bypassing the gop, is that i think democrats have done so much for trying to accommodate republican members in congress this year with the republicans, you know, overlooking the fact that president obama came in with a substantial vote from the electorate wanting some changes made. they've been nothing but the abstraction is to change, you know, while they say they can do it for this reason or that, they pull all kind of parliamentary tricks to keep legislation from moving forward. and we absolutely must have

health care reform, however small the incremental steps are to get it. >> host: you don't think we can still get health care from if the democrats were to include the republicans in the conference process? >> caller: not in this decade. i mean, you know, there's a 47 million americans without health care. i don't know where this lady concerns are, but that's not acceptable. harvard study estimated that 45000 people a year die for inadequate access to medicare -- or to health care. we've got to, you know, i'm on medicare select. i'm 67 years old. and after the first of the year, my co-pays went up pretty substantially, even though my primary source of income, social security, was stagnant. you know, that's going backwards.

>> host: thanks for your call. more from the article in the baltimore sun. they write, h @ @ @ @ @ @ @ @ @ g ,

let me suggest to you, ma'am, my brother is a vietnam veteran. he hadn't seen a doctor since he was discharged from vietnam. he finally -- after playing around got -- back on the -- got on the v.a. rolls. i had to take him to the hospital, to the v.a. hospital, where they went and checked him out. they did 42 tests and three procedures on him in 4 1/2 hours, madam, and i don't

believe there's any regular hospital that's going to get that much done in that amount of time. >> we want to remind our listeners and viewers that they can also get in touch with us via email, journal@c-span.org and twitter, twitter.com/c-spanwj. i want to show you a letter that was sent by our management to the leaders in the house and senate. we write as your respective chambers work to reconcile the differences between the house and senate healthcare bills c-span requests that you open all-important negotiations including any conference committee meetings to electronic media coverage. the letter goes on to say, president obama, senate and house leaders, many of your rank-and-file members and the nation's editorial pages have all talked about the value of transparent discussions on reforming the nation's healthcare system. now that the process moves to the critical stage of reconciliation between the chambers, we respectfully request that you allow the

public full access through television to legislation that will affect the lives of every single american. back to the phones. asheville, north carolina on our line for republicans. go ahead. >> caller: i don't think that they should bypass the gop. obama doesn't want to listen to anything that the people have to say. they bad mouth the tea parties, call them radicals instead of people speaking up for what they want. that's not just republicans. there are democrats and independents, too. and why should he own the healthcare -- because that is exactly what he said. i will own it. and why does it have to be 2700 pages. i'm in my late 60s. all the insurance that i've had in my life, whether private or through an life wouldn't take 2700 pages to cover and people don't even know what's in it. i think it's a step toward communism.

people want the government to take care of them. they don't want to have to make decisions. do they not realize it costs them their freedom? i don't care for this administration at all. they run up trillions of dollars in debt. and say they inherited something. whenever those trillions of dollars only help the rich and now they want to take over healthcare. and there's so many illegals in the country that still get their healthcare, even if they are given amnesty, they're still dishonest by being illegal in the first place. and they use several -- several people use the same id and so they won't be paying like we will. >> ma'am, what specifically are you concerned with that's going to be overlooked or not discussed in the reconciliation of this healthcare bill? . >> caller: i'm sure that the people that does the voting don't even know what's in that 2700 pages and i don't think

abortion should be covered. i just don't trust it. >> thanks for your call, ma'am. in the op-ed section of this morning's "washington times," their lead editorial, hiding health bills behind closed doors is the title. democrats keep government care secrets away from the public. it may be a new year but congressional democrats are planning the same old sorts of sleazy tactics in their bid to take over america's healthcare system. congressional republicans, especially, in the senate, should not let them get away with it. transparency and ethics should be a republican rallying cries and obstructions on those grounds should be a point of pride. by now it's almost trite to complain that president obama repeatedly has broken his campaign pledge to, quote, broadcast healthcare negotiations on c-span so that the american people can see what the choices are.

>> salisbury, maryland, rick, on our line for democrats. good morning. >> caller: good morning. >> your thoughts on the democrats' plans to bypass the republicans on the healthcare reconciliation. >> caller: well, the democrats have went to the homes and pleaded and begged. i mean, we're doing everything we can possibly do for you guys. and just remember the last eight years. the republicans didn't accomplish anything. all they did was robbed, stole and cheat people of their money. and the vice president -- he was in hiding. the president wasn't doing a thing for the -- the democrats should love it down their throat. and get it going.

also, can you -- is it possible to do a poll. 'cause it seems the poll most americans don't want healthcare. i have healthcare. i work for the government. i have excellent healthcare. but a poll like break it down into the black, white, whatever then do an average 'cause i don't think the polls are correct. i have to say something about dick cheney. we listened to this guy -- he's the only one speaking against obama. no one else with -- you know, his guys or condoleezza rice or colin powell -- nobody is supporting what he said. >> we're going to leave it there and keep the subject -- keep the discussion, rather, going on democratic leaders and their plans to bypass the gop on healthcare legislation reconciliation. next up is adobe in houston, texas on the line for

independents. good morning. >> caller: good morning. thank you for your wonderful program. i don't think that this is the way our government should work. however, i feel like the democrats have been pushed to this point where this is the last resort for them. and at the same time, though, i worry about the fact that you don't have an opposing point of view on how this massive piece of social literature should be constructed. >> well, let me stop you for a second. how were the democrats pushed to this point? . >> caller: well, i feel like the republicans were -- had set their agenda to be obstructionists. i didn't feel like the republican's side offered any constructive strategies to counter what the proposals were from the democrats. for instance, if i were a policy advisor for a republican

senator, some of my suggestions might be would be perhaps stratifying premiums according to risk as opposed to community certifications of our premiums, which this bill would encourage. i would also propose increasing the medical loss ratios that insurance companies have -- have to take out of their profits from 85% where it is right now to like 90%. i feel like those sorts of constructive proposals to counter what the democrats are putting forward might have helped progress the debate forward. i don't feel the republicans are really adding any value. and i feel like in the end it came down to a fight or a tug of war over a political popularity

and not necessarily what was in the best interests of the country. >> thanks for your call. in the next segment of the program we're going to be talking about terrorism and homeland security with evan paris, a reporter with the "wall street journal." he's got an article in this morning's edition under the headline, dozens of names shifted to no-fly list. >> back to the phones and our decision about democratic leaders, possibly bypassing that gop.

our next call comes from texas. jim on our line for democrats. go ahead. >> caller: good morning. and i would say it is about time the democrats got some guts and get after the obstructionists. i kind of run a little analogy here. i think what the democrats have been confronted with. i'm 73 years old. and i spent a lot of times in the civil rights wars, if you will. we had to confront all the racists down south. we had our heads split open occasionally. but we overcame. the democrats pretty much are fighting a bunch of primarily southerner right racists. and for the lady in arkansas, ma'am, when the civil rights act was signed, the republicans developed what they called their southern strategy, which was an appeal to the white racists. and all the, quote, yellow dog

republicans became republicans because the republicans were primarily -- >> "washington journal" is live every day at 7:00 am eastern. we're leaving this recorded segment and taking you back to the national press club. a discussion hosted by the journal health affairs and the scan foundation. you'll hear remarks in this session from professors at harvard's medical school and more about a provision in the senate house bill creating a new long-term insurance program for the elderly and disabled. live coverage on c-span2. >> we are featuring three wonderful articles in this issue, not that they're not lots of others. as we mentioned all of them we think are wonderful. we're proud of all of our children in this issue but these three in particular looked at some issues that we thought were very important. first, whether the benefit structure that we have created in this country really does speak meaningfully to the needs of different individuals in different care settings. we've heard already this morning the answer is not. but what we'll hear about a very

interesting proposal to reconfigure those benefits particularly to meet the needs of people who might be in a conventionally long-term care setting but arguably nearing the end of life. we're also going to hear about another relatively new feature on the u.s. landscape that you heard about already this morning, which was -- is assisted living. and we are publishing, we think, a definitive piece by david stevenson, a colleague on really what is the presence of assisted living in the long-term care, long-term services. what are some of the critical policy issues that pertain to assisted living? and then finally harkening back to the councilman's observation of nursing homes in d.c. and how environments could be improved we'll hear from maryjane about the culture change movement in nursing homes.

let me give you a little bit more background of all of our authors who will speak on this next panel now. first of all, the first piece i mentioned on the new benefit is by haiden huskamp who's associate professor of policy in the department of healthcare policy at harvard medical school. where she focuses on mental health policy, prescription drug policy and the financing and utilization of end-of-life care services. she currently serves as a principal investigator on a grant of funding from the medicare part d generousity of healthcare on nursing home residents and she completed a study with factors with discussing hospice care with a physician among metastatic lung cancer patients. funding for that research provided by the national cancer of institute and the department of veterans affairs. so we're very happy to have her here this morning to speak about her article. we'll then hear on the assisted

living piece from david stevenson an assistant professor of health policy also in the department of healthcare policy at harvard medical school. his primary research interests are aging disability and long-term care and his recent work has focused on a range of topics in that sector including long-term care financing options, the rising use of hospice care and so then. so we're delighted to have him speaking on the assisted care piece. and then finally as i mentioned maryjane koren from the commonwealth fund. she holds the pickert quality of care for failed elders program and manages the commonwealth fund harvard university minority fellowship policy as well. she's an internist and geriatrician. and and she began her care

geriatrics and she's had plenty of experience in the real world delivery of these services as well. so with that, let's welcome to the podium, dr. haiden huskamp. [applause] >> thank you, susan. we want to thank -- my co-authors and i want to thank the health foundation and the scan foundation to talk about these important issues and i apologize in advance for the poor quality of my voice today. almost a quarter of people who die from a chronic condition die in a nursing home and so high quality end-of-life care is an important component of nursing home care. yet we know from numerous studies that the quality of end-of-life care received by nursing home residents is often poor with a high prevalence of unrelieved pain, poorly managed symptoms, and dissatisfaction with care and communication

among next time residents and their family members. many of those quality deficiencies are influenced by how services are covered and financed. so, for example, whoops. there we go. for example, even though a person supportive in palliative care are in needs, medicare and medicaid reimbursement rules tends to create benefit silos for one for long-term supportive services in the nursing home setting, another for hospice, a third for post-acute, post-discharge care in a nursing home and so then. and this could make access to appropriate services and ongoing communication across providers difficult. another example is the relative generosity of medicare and medicaid reimbursement for nursing homes, which creates incentives to hospitalized residents in order to obtain that higher post-acute medicaid rate for the 100 days and that can result in the churning of residents from the nursing home

to the hospital and back again over time. also leading to poor quality of care. the primary mechanism for financing end-of-life care for elderly and disabled individuals is the medicare hospice environment and the paltive and supportive environment. and to be eligible, a beneficiary must have two physicians certify they have a prognosis of six years and less and they have to agree in writing to for go treatmentive. it's the eligibility rules and the benefits package and the payment for the hospice are the same for all nursing home residents and community dwellers who use the benefit. for a hospice enrollee hospices is provided a fix daily rate. when the benefit was adopted back in 1983, it was intended to allow terminally ill

beneficiaries mainly cancer patients then to die at home with improved quality of life. it was expected hospice enrollees would have less hospital enrollment. the benefit was extended to the hospital setting in 1989 and use in that setting and popularity has grown. sill a relatively of nursing home residents elect the benefit around 6% a year. typically, the payment that the nursing home receives for the long-term supportive services is the same regardless of whether a resident elects the hospice benefit or not. and if they don't the nursing home is responsible for providing the end-of-life care services out of their funds but low medicare rates in the state can make this difficult. we believe the medicare hospice is a poor fit for many routines. the residents have multiple chronic and serious conditions that may be interrelated rather than just a single terminal i also and as a result the potential for part a offsets for

requiring a hospice enrollee may be cure for users for community hospice users. the other reason that eligibility requirements to be hospice southbound difficult for nursing home residents. 2% of residents have cancer as a primary diagnosis and most have advanced chronic conditions for which it's difficult to estimate time to death accurately. and as a result the prognosis requirement may disproportionately create barriers for hospice for nursing home residents. also high levels of cognitive impairment in this population, limited family member involvement for some residents and limited presence of physicians in the facility all make it particularly difficult to have conversations with residents and their family members about hospice or to complete the paperwork that's needed for hospice election. a third reason is that the package of services needed by a terminally ill nursing home resident may be very different

than what's needed by a community dwelling resident at the end of their life. a 90-year-old who has advanced dementia may have different needs than a 65-year-old with cancer living alone in the community. and then a fourth reason is that average hospice -- several studies shown average hospice costs are lower for nursing home residents than for community residents and that's due in part to the overlap between the supportive services that are provided by the nursing home for nursing home residents and those that are provided by a hospice in the community setting. so in the community, the hospice may be providing some of the things that the nursing home is providing, the nursing home resident. and the current reimbursement approach fails to account for these joint efficiencies in management. we recommend to address these issues creating a separate benefit that's tailored to the needs of nursing home residents. under our proposal, all residents who demonstrated a threshold level of end-of-life care need which could be triggered based on items from

the minimum data set would be automatically eligible to receive covered palliative and psychosocial services. they wouldn't need to elect the benefit formally or for go curative treatments although a family member or the resident themselves could choose to deny any of the services at any time. instead of paying the hospice directly, we suggest paying the nursing home which is the party that has the most control over the beneficiary's care and is accountable of resident outcomes. the nursing home could then choose to contract with the hospice for these services or provide them directly. and the payment could account for the different costs of providing end-of-life care to a nursing home resident as compared to a community dwelling resident to account for those joint efficiencies that i mentioned. ideally these end-of-life care funds could be bundled with funds for post-acute and long-term care to remove incentives to turn a patient from one setting to another. and then a third piece that we think is critical would be to create a new set of end of life quality indicators for enemy

residents. -- nursing home residents and hold nursing homes accountable for the quality that's provided at the end of life as they are accountable for restoration and maintenance of functioning. the goal for our proposed approach is not to push people to palliative care but instead to give nursing homes greater flexibility and greater resources to allow them to provide high quality end-of-life care to all their residents and to allow better integration and palliative care for end of life. [applause] >> thank you very much. i'd also like to thank health affairs and the scan foundation for putting together not only this forum but this issue. it's a great venue for the articles and for stimulating-thinking. the title of my brief remarks

and also our paper which they are based is the market for assisted living. i'd like to begin by acknowledging my co-author of harvard medical school and the funding of the project. i'd like to begin by saying that the purpose of our study and the purpose of our work really in this area was developed a more detailed look at the market level in terms of nationally. there's been good work from the national academy of state health policy that's focused on the state level on assisted living supply and assisted living regulation. we really wanted to focus more closely at the market level and look at what market factors did and did not influence where assisted living facilities tended to locate. so some context. assisted living facilities have emerged, you know, relatively recently on the long-term care landscape really over the past few decades. most of these facilities have come in to being. this growth has occurred largely

without a substantial amount of government financing or regulation. on the financing side, medicare waivers do provide, you know, financing for some services in assisted living facilities, around 100,000 such slots in 2007. but there's not a great deal of financing available for lower-incomed people in assisted living and that's a relatively small portion of the assisted living facility's business. also on the regulatory side, most of the regulation that occurs is really at the state licensure level. they tend to be licensed across a variety of categories and states and the categories that they are and the services that can be provided can vary quite a bit across states and even within states across the categories into which they fall and so there's really a standard agreement across what people call assisted living facilities. i should note that there's no single definition of assisted living. there is a definition that many

adhere to in terms of what assisted living facilities should be about, what types of services they should provide, what types of supports and what types of things they should allow individuals to do. in terms of participating in their communities but there's no single definition in terms of assisted living facilities. there's also, you know, in more particular to the objective of the study, there's no single source of supply data nationally. for individuals wanting to do nursing home work there's a national repository of data on nursing homes nationally that goes back in time. there's no such research that exists. and so these gaps in the knowledge base really gave genesis to this project, which was a primary data collection project to collect data on assisted living facilities nationally so we got the names, the number of units or beds in those facilities and their precise locations through primary data collection mostly going to states and finding out if they had detailed licensure registries and also in some

instances going to associations to supplement those. there's components on this data collection and this is 2007 data but we also try where we could to collect data back in time by getting historical information on assisted living supplies within particular markets. and then for the purpose of this study and for the purpose of further work, we merged these assisted living supply with nursing home and other market-level data and that's my remarks and our analyses really focus on to a large extent below. so a quick way perhaps to give you a sense of our data collection and what we found is to show a map and this is obviously a map of the continental united states. the demarcations of this map are counties. we define counties as the markets that we were looking at. in part because that was an easier definition of market to look at in terms of blending it with other data sets. but we can see in this chart is

going from the areas with no shading where there's no assisted living facilities to the darker shading. you go up the quartiles of assisted living penetration and the way you define assisted living penetration is by the number of assisted living beds or units per 100 elderly within a market. the darker where there's nor assisted living or beds per 100 elderly and the lighter areas where there are fewer assisted living beds or units per 100 elderly. and the main point -- the two main points really that i want you to get from this map is there's a substantial amount of variation across states. some states have a fairly robust supply of assisted living facilities, whether it's oregon, washington, minnesota, virginia. these states have a high number -- or a high penetration of assisted living facility units per 100 elderly. and then there are other areas where there are fewer assisted living facilities. where it's texas, new mexico, arizona, west virginia. these states. so substantial variation across

states is the first point. the second point is really that there's substantial variation also within states. and this isn't that surprising. the assisted living facilities tend to locate in the more urban and suburban areas and less so in the rural areas and i'll point this out again below. so just to detail very briefly our primary results and there are tables in the paper that detail these more -- more in depth. but the first and very simple result is that assisted living facilities are widespread seniors housing and care option national. we found around 830,000 beds or units nationally. depending on how you count facilities and whether you count small facilities that number could be as large as a million beds. and this is in the context of 1.6 million nursing home beds nationally so it's a large number of assisted living beds nationally. and as i noted in the previous slide the penetration can vary substantially across states and within states across markets. given that assisted living

facilities have tended to rely largely on private financing, largely on people paying out-of-pocket for these benefits and lower-incomed people have not had, you know, access to, you know, a medicaid benefit to pay for these services, it's not surprising where assisted living facilities tend to locate. they tend to locate in higher socioeconomic areas. so areas that have higher education levels, higher levels of median income, greater levels of housing wealth, this is where assisted living facilities tend to locate. just to give you one example, areas with no assisted living facilities, whatsoever, the housing -- median housing values is around $68,000. but areas with, you know, the highest penetration of assisted living facility beds, the median housing values is around $98,000. so it's quite different across, you know, the penetration areas. and it varied in exactly the way you'd expect. so the highest penetration areas had the highest income, highest wealth and the lowest penetration had the lowest income and lowest wealth all the way down the line.

a related point there's a lower proportion of minorities in the areas where they locate. and these characteristics tend to locate with the socioeconomic status that we looked at which again is not that surprising. we also looked at the nursing home markets within -- within these markets as well. and so we wanted to see what the impact of assisted living facility penetration had on next time markets. we can't really look at the impact but we looked at some of the associations here and we found not surprisingly that the lower medicare markets tended to be where the assisted living facilities tended to be. and then finally if states had a greater proportion of long-term care dollars going toward home and community-based services, this again where assisted living facilities were located. the capacity matters matters a great deal or philosophy matters a great deal in those states where not only facilities are

located in greater proportions but where assisted living facilities tend to locate. so not surprisingly there are a number of policy challenges. and i'm only going to detail a few and we go more depth in our paper about some of these. i think the first one is a very basic one. the definition of assisted living varies substantially. you know, the definition of a nursing home is fairly standardized because they are comprehensive regulations that dictate what the nursing home should be essentially. but an assisted living can vary across states and across licensure categories what these facilities are allowed to do and what types of individuals they can serve. and there's a tension i think it's just important to raise between a greater standardization of what assisted living facilities are and what they do. and allowing the flexibility and innovation, you know, that many people would like to see. second is -- as i've detailed, assisted living supply is concentrated in higher income areas and areas request greater home community access structure. access seems particularly problematic in rural areas and

so access isn't just financial access. there's a capacity issue as well. third, disparities in assisted living facilities access could exacerbate or at least re-enforce the two-tiered long-term care system that we have currently so the individuals who are lower income and rely on medicare for supportive services, you know, they're not likely to benefit from assisted living facilities and as robyn pointed out in an earlier panel, assisted living facilities or assisted living facility-type care has typically not been available for lower-incomed individuals so there hasn't been a lower assisted living model in states. and finally expansion for public financing for assisted living. it would likely be expensive. states are reluctant to go too far into the assisted living arena in part because they know how popular such a benefit would be and so there's a tension between, you know, expanding, you know, home and community-based services into assisted living facilities.

and there's a challenge in ensuring that services are targeted to individuals who would otherwise be going into nursing homes. and so states have a balancing act, you know, to pursue in terms of their policies. so with that, i'll end. thank you. [applause] >> good morning and thank you very much. i will also add my thanks to those of make sure. -- to my colleagues. this is an interesting topic and you're sort of thinking to yourself, you know, nursing homes it is so last year. [laughter] >> but, in fact, they really have to be part of the continuum of long-term care supports and services that we offer because we're going to continue to have a population. not just because of adl needs but because of their social

milieu will require residential care and nursing homes are serving as a post-acute care setting as people transition between hospitals and finally into their homes. sort of this is an opportunity. this culture change movement is a real opportunity to sort of capitalize on this transformational power. and i would argue to also realize the potential in over 87 for those who are policymakers. problems with nursing home quality are long-standing. and we have the feeling that culture change kind of grew out of the recognition that there needed to be a different way by -- on the part of providers. but, in fact, what's really interesting is that this culture change movement came out of consumer advocacy. and it started way back in the -- early 1980s when organizations such as the

national citizens coalition for nursing home reform insisted that the iom recognize the voices of resident and recognize residents had something to tell us about what quality was for them. and the policy that developed this revolutionary statute in over 87. i read it as regulatory hicould you. if you read it, what you will see is that even though we didn't have the language of culture change and the language of person centerness. this is a statutory basis for individualized care. and after the enactment and they looked around and said it doesn't have to be this way. something is wrong here. things aren't right. and they in a sense started to think about new ways of providing care that would overcome some of the boredom and

the loneliness and the helplessness that were killing people in nursing homes every bit as much as pressure ulcers. and the pioneer group came together and it was not a network of providers. it was researchers, policymakers, academics, regulators and they all sort of came together to try to create a body of information that people could draw on to try to do this transformational change. it really requires that we think about nursing homes in a totally different way. and we convened a group -- i shouldn't say i, we had a group convened of stakeholders who said if you had a totally culture change nursing home, what would it look like? and they identified several parameters in it. it should be resident-directed. what does that mean? well, it means that people get to make choices. that they -- that they have their rights. and you would argue, well, they are all demented. they can't. you can still decide that you want to wear the red dress or the blue dress today. or you can decide to stay up and

watch the late news. there's lots of choices we have to afford people. do you want a bath or shower? pretty easy. it also should be home-like. people are going to be there and whether you're there for three weeks or for three years, the more home-like it is, the more functional you will become. i'd like a show of hands how many have an overhead public address system in your homes. [laughter] >> with the technology we have today, you don't have to do that. and so we've got to try to think about what's not home-like in these environments and what can we change that's pretty easy to change? when we talk to residents, we say to them, what do you most value? what's quality? and it's the closeness of the relationship that they have with that nurse's aide. and so culture change is trying to bring these people together to form these close relationships and these bonds. it also recognizes the fact that quality is based on the staff. and so it is giving the staff the resources and the skills they need to do the job, the

authority and the autonomy to do it and then to thank them for the work they are doing. it is incredibly hard work. but quality is dependent upon the empowerment of those people. it is also collaborative decision-making. a nursing home that is a culture change nursing home spreads decisional authority and lets the people at the front line make decisions. it also is continuous quality improvement. and we have a feeling sometimes, i think, that it's just about the environment or it's just about a parrot in the lobby. it is not. it really is about measuring and showing the changes that you're making and how it affects not just in a sense the physical care but also the well-being of people in that nursing home. there we go. there's a growing evidence-base for culture change. it is not a single model. it really espouses a set of principles and how they enact them quite different.

but we have had an evaluation of some models the eden alternative you've probably heard of and certainly the greenhouse model, which shows that there are very good outcomes both for residents and for staff. there are also a number of practices associated with culture change that are starting to be researched. and i think some of the work that the greenhouse project is doing will very shortly give us some very good information on the costs of this particular type of program. back in 2005, we did a survey at the commonwealth fund healthcare opinion leaders and we found the 73% of healthcare opinion leaders had never heard this. we repeated the survey in 2008 and less than 34% had never heard of it. we also did a nursing home survey asking directors of nursing, are you doing culture change? and almost everyone had heard about it. so in the field this is a very well known phenomenon.

unfortunately, it's not an easy thing. it takes really committed leadership over a long period of time to kind of get this to happen. but about a third of the nursing homes, in fact, said we're doing something about this. we're trying. we're starting. another third said we know about it. we're committed to starting soon. so how do we get that third to start and the third that has done nothing. to really get in there? and i think that's going to be the challenge. we've been very fortunate -- i say we, the culture change movement has been incredibly fortunate in the partnership that it's had and the support that it's had from cms. thomas hamilton, cynthia and karen have all worked very hard to ensure that regulation is less and less a barrier to culture change. there's still other problems, obviously, robyn mentioned work force and the need to train people not just -- excuse me, not just to work with the elderly but to work in this very different way. very team-based way.

we also have the finance problems and other issues, sort of the dominance of critical concerns we have in nursing homes maybe we should be looking atwell being and quality of life. whoops. so what can policymakers do? you know, you might sort of think well, this is sort of down in the weeds. there's not much we can do here but there's an incredible amount they can do. robyn stone did an amazing study for us looking at what states are actually doing around culture change. and many of them are being very generous with their staff. letting them participate in culture change coalitions, helping to use civil monetary penalty funds to support these movements. four states at least are starting to use payment incentives. using as markers for the pay for performance kinds of things of culture change phenomenon. colorado springs to mind particularly. also looking at support for innovation and design. so many of our nursing homes are really obsolete.

and we don't really want to start building 1950s nursing homes again. we now know there are other models that we can be using such as the greenhouses or small houses that bring people together into households. some of the recognition programs, kansas is really in the forefront there with their peak program. they go around, they find out who's doing culture change, who's doing this and, in fact, they found that what they do is $300, you know, to have a party and their picture with the commissioner of health or something. people love it. this is really -- it doesn't have to be a high cost thing. certainly work force enhancements and participation in research efforts. somebody mentioned the word "fun" and you don't usually say fun and nursing homes in the same sentence. but mississippi methodist senior services operates a number of campuses around sin. -- mississippi. they were the ones who started the prototype for the greenhouses in tupelo and when

hurricane katrina was threatened in the gulf coast, they moved people in the independent living and assisted living dune in the gulf up into tupelo where they had four brand-new greenhouses set to open. at the end of that, at the end of sort of the aftermath of the hurricane, most of the houses and assisted living centers down on the gulf were still intact. they had not been damaged. the people who had been moved up to the greenhouses didn't want to leave. thank you. [applause] >> and that story brings to money, i once did a story of the greenhouse in nebraska where one of the older residents who had eventually died but was able to celebrate her 100th birthday at the greenhouse before she did and the staff asked her what she most wanted for her 100th birthday and she said, a

margarita and a cigarette and they got them both. [laughter] >> fun can be had. we have a bit behind schedule so we're going to try to keep this section of q & a relatively short in the interests of moving into our final panel and then we'll have a longer stretch of time for more generalized questions and answers. but let me ask you first, haiden, to discuss one issue that i think arises out of the conversation earlier this morning as well as your paper, which is -- we heard a lot earlier this morning about the problem of having particular programs drive people into situations that they may not want and particular benefit structures lock people into situations that they don't want, particularly, obviously, in the case of medicaid and driving as it has for many years towards the institutional side. so as we think about creating new benefits such as the one you described, which really does

sound like it would meet a tremendous need, how do we get out of the business of creating new benefits that also will lock people into various structures or settings as opposed to creating the most flexibility for people really to have choices to where it is that they live? i know you've given a lot of thought to this. how do we -- how do we get out of this policy-making bind going forward? >> sure. and i should mention one of my co-authors who's sitting next to me, david stevenson so he should feel free to chime in also. but i think it's a big problem across the healthcare setting these sort of silos that have been created certainly with medicare and medicaid. and that end up resulting in poor quality of care in many ways for patients. that's one of the reasons why we wanted to, you know, advocate for a bundled payment and there's lots of talk these days of bundling of payments. and there's some real advantages to doing that in terms of, you know, creating more flexibility for meeting residents' needs in this case so if you could -- if

you could bundle both post-acute payments with the payments for long-term supportive services and the end-of-life care payments we think that would go a long way in terms of giving more flexibility to facilities and in meeting the needs. >> david? >> i just second what haiden said in terms of rationalizing the incentives whether from silo benefits from post-acute in the nursing home in the life care separating them out from the different benefits. what we propose integrating them and bundled approaches is the way to do via payment but hopefully it would happen conceptionly as well. >> as i say we do want to open up questions and discussion. let's take a question over here, please. >> gary, now you with atlas research. it's really a comment on this last report.

which i have to say i'm rather disappointed that it really does not come down to the ultimate bottom line of the decision process in cultural change in nursing homes which is the management. when you say one-third of homes are doing one thing or another. no, it's not one-third of homes. it's one-third of managers and owners that are or aren't doing something. and that -- that reflection repeats itself as you go through all the findings of who's doing what. it's not the physician that's deciding to change the culture. they are not even there half of the time. it's not the nurse. it's the manager who decides whether there's going to be a nurse or not. and in terms of a policy implication, we've got to figure out ways to strengthen the professionalism and investment in the management level in those institutions or your -- because they are the translation people. they're the ones who are reading the journals, hopefully, they are the ones here reaching with

the findings of the study of this kind. the only person that's going to carry it in the front door and do something about it, really, is the person that's running the place. and that's more true of a nursing home than any other person in the institution. >> maryjane? >> i think that's why in one of my slides that i pointed out that what you have to have is committed leadership. and that's what i was referring to. so it's not just organizational redesign and environmental enhancement but the first sort of the foundational piece is the committed leadership. >> let's take a question from larry there. >> i'd like to ask dr. koren, you know, everyone is complaining about nursing home care. it's the one sector that we all seem to love to hate. and we know it needs to get better. can you comment on the culture of quality improvement and the effects of advancing excellence

on creating a management culture of quality improvement and does that really hold promise or is it a sort of a short-term flash in the pan that we can all feel a little better about? >> what larry is referring to is the advancing excellence quality campaign for nursing homes. and that was started with paul mcgann at cms and a whole group of stakeholders who came together to try to help the industry pull its socks up on its own. and it has been remarkably effective. i think that it is going to hopefully be a continuous process. what we've tried to do is we've tried to have eight goals that nursing homes work on and working specifically on the organizational supports as well as the clinical areas that we're trying to do. we've set up local area networks for excellence in every state except for about two. and we're hoping that that would be the legacy of the campaign.

but at this point, it really seems from the data from everything else that we can show a campaign effect in the clinical areas. but that it also helps nursing homes reduce turnover, stabilize their staff and their work force and also try to create this consistency of assignment between aides and their residents so that the relationships that are so valued are there. so i think that it will continue. maybe not in its current form. i don't know how it will metamorphosisize and culture change is permeated in that even though that terminology is not particularly used. >> let's take a question or a comment from diane meyer, who also has a piece in the journal responding to haiden's piece. >> thank you. haiden and david, obviously, i'm very familiar with your article. and maryjane just read yours

when i got the journal this morning. and what hasn't been mentioned is the link between culture change and improving access to palliative care. what's great about the culture change care it sets the default. it should include attention to resident-centeredness and include focus making things home-like because all people residing in nursing homes have similar needs. the vast majority have similar needs. so i argued in my piece in response to david and haiden's article that essentially all nursing home residents who are not receiving rehab are near the end of that i ever life. and have universally palliative care needs and palliative care is care focused on relief of symptoms, care focused on understanding patient and family goals and making sure that care is concordant with those goals

and reducing transitions and enhancing continuity of care. it's not prognosis-driven. so my concern about your proposal is that it is -- it remains prognosis-driven. in other words, it depends on being able to identify a population within the nursing home who's more likely to die than another population. and my concern is that since virtually everyone in the nursing home is in the last few years of their life, how do you justify trying to subsegment that population and deliver different care to a subset than you deliver to the whole? >> who wants to respond to that? david will take that up. >> we and diane spoke earlier about this. i think to some extent, you know, our basing the palliative service needs on a trigger, whether it's through the mds or

other critical information, you know, might in part have been a practical mechanism to, you know, limit, you know, the reach of the benefit. but i think your point is the right one. that, you know, all residents with long-term care needs who aren't there for rehab or back to an assisted living facility either have or will have soon palliative care needs and it may be quite difficult and counterproductive and i think, you know, that needs to be taken into consideration whether, you know, something such as what we proposed were implemented or something broader. >> i would just echo what david said, too, in that it's very difficult to draw a line -- we tried to base our line on need, some indicators of end-of-life care need rather than, you know, a six-month prognosis. but i think it's a difficult thing to do and, you know, you're weighing the practical aspects of something like this

through congress and, you know, a broad expansion of something of something as opposed to to a redesign that could help. so, you know, these are things we were weighing when we did it. >> great. let's take another question or comment here, please. >> hi, i'm brenda spillman from the urban institute. and i was interested in david's talk. it's a topic that i've worked in on residential care settings. and i wondered if you could comment -- i know -- you don't know what an assisted living is so how can you count them? and it's a different methodology but your numbers suggest no growth since like the late '90s 800,000 to 2 million beds or units so i just wondered if you could talk about that since i haven't had time to read your article yet. >> so, what i'll say is the way we define numbers in terms of our study is that we limited assisted living facilities to those of 25 or more units.

and so that substantially reduces the number of assisted living facilities nationally. robert mollic's work had previously identified around 35,000 facilities and around a little bit short of a million beds. our work identified basically on a little bit more than a million beds and they are fairly comparable to the late '90s two 2,000s. there hadn't been a big growth. but in particular of our studies and correlations that we looked at, we looked at facilities that had 25 or more units and that was around 11,300 facilities, i think, and the beds was around 850,000 beds. and so actually beds it's not a great deal different from the total number of beds if you include all the small facilities. and our rationale for excluding the small centers we wanted to look at the purpose-built assisted living facilities unless it's a smaller board and care homes that have been included in previous analyses. it was really a judgment call and we did the analyses both

ways and found very similar things but you some states such as michigan have a very high number of these facilities with a number of beds and we didn't include those in our study. >> david, just to conclude, the wrap on assisted living facilities for years has been that there's a lot of assisted living going on in them but not assistance. [laughter] >> what is the likelihood -- one imagines the likelihood as large that this could change under implementation of the class act. suddenly there would be resources available for people to import their own assistance into assisted living. is that a good thing or is that a bad thing? >> i think it's largely a good thing. i think, you know, like most good things, though, there can be negative aspects as well. and if individuals have an extra few thousand dollars a month because of a benefit because of the class act benefit, it certainly can be advantageous of people hoping to seek services in the assisted living facilities, you know, which on average, you know, can be 34, $35,000 a year.

but then prices can go up quite a bit if people need more substantial levels of services. and so, yes, it's a very good thing to give this option to more people. but there are -- again, there's an oversight responsibility that, you know, will arise if more disabled people are being served in assisted living facilities as they have been and if more individuals continue to be serving these facilities it will come up in terms of, you know, potential government oversight that would be needed. >> sort of a recommendation of policymakers as they watch this unfold is what? >> you know, it's hard to say. i mean, assisted living facility regulations largely fall under the states and i think that would largely continue unless there were substantial infusion of federal dollars and when the cash benefits such as the class act -- i don't know that will change and so i think the states are really the ones who will be on the front lines of assisted living facility oversight now and in the future. >> and i'm sure they'll be grateful for the opportunity. well, terrific.

a great discussion. i just wanted to mention for those of you who might have been furiously looking through the journal for maryjane koren's article, actually we are publishing this week on the web as one of our web first papers. so you will actually be able to access that on the website. i believe we do have hard copies of it available as well. but it's -- as we emerge into a great digital age we increasing have the ability at health affairs not only publish obviously on paper but to publish very timely pieces on the web and we took advantage of that in this case so we could bring out that article as quickly as possible. anyway, thank you very much, all three of you, for a terrific discussion and we'll now -- [applause] >> we'll now move right into our final panel on who pays and how. and may i ask the three panelists on that panel to join me up here on the stage.

we're going to be hearing here from authors of three papers. one of which deals with the public and private financing in long-term care and long-term supports and services. david stevenson was also a co-author on that, but we're going to have one of his co-authors on the piece, mark cohen who is president of long-term care insurance provider life plans speak about that. we'll then hear from rachel warner, assisted professor of medicine at the university of pens on how to use the market to incentivize quality improvements. and then finally we'll hear from mary naylor was our thematic advisor on this issue but who also is on her other life the marion weir professor of gerontology school of nursing

who will be speaking about a very important announcement today which is about the formation of the new long-term quality alliance. and in our journal there is a people in places column that provides some more information about the formation of this alliance and the exciting opportunities it will afford to continue to improve long-term quality care. in the interest of time, i'm not going to go into your terrific bis -- bios but they are in your packet and mark cohen. >> thanks everybody. i too want to thank the scan foundation for the opportunity to present the paper and, of course, my co-authors david stevenson who probably has written half this issue. eileen and brian. in this paper among other things we hope to put to rest the false dichotomy that long-term care should be either a public or

private responsibility and that public policy should prioritize either development of the private market or expanded public coverage for long-term care. proponents and critics alike point to the current modest role of private insurance and financing care respectfully arguing that public policies impede development of a more robust private market or that private policies are unaffordable to most americans and are, therefore, unlikely to play a substantial role in providing risk protection. we begin from the premise that public and private coverage for long-term services and supports can serve complementary roles making the key public policy question not which approach to make central but rather how to align incentives across public and private financing sources to create a rational, more sustainable system where both public and private coverage play sizeable roles. on one point, both proponents and critics of long-term care

insurance agree, namely that the distribution of financial risk where many people will spend nothing on care and a few people will incur catastrophic expenses applies an appropriate role for insurance as an efficient mechanism to spread risk. even so, most people do not have private insurance. and a review of the current state of the market shows that there are around 8 million policies in force. clearly, the market size and complexion have not lived up to projections. ironically if we look historically at the quality of policies has greatly improved over time. with expanded coverage for home and community-based care, assisted living care, parity and daily benefits for institutional and home-based care and inflation protection features. today's buyers also have changed and tend to be younger, wealthier, and less likely to be drawn from the middle class. why is it that more middle class

americans don't buy long-term care insurance? some argue that the product is simply not affordable to a broad cross-section of americans. or put another way, it is not viewed by a majority of consumers providing sufficient value in light of its premium costs. in fact, there are both supply side and demand side reasons why there is a value gap in the market. on the supply side there's information asymmetries between buyers and sellers which lead to adverse selection and moral hazard thus affecting prainl pricing as well as the comprehensiveness of policies offered in the marketplace. on the demand side research has shown that individuals who do not buy policies tend to generally underestimate their risk and overestimate premium costs. many people mistakenly believe if they need care the -- >> we break away from this event now for a brief