Looking at Institutional and Community Living Through Data- An ADA Participatory Action Research Consortium (ADA-PARC) Report

Looking at Institutional and Community Living Through Data- An ADA Participatory Action Research Consortium (ADA-PARC) Report

April 19, 2017


Thank you very much, Robin. Welcome, everyone. I am Lewis Kraus with the Pacific ADA Center, moderator for today's ADA audio session, and we are looking at institutional and community living through data - An ADA Participatory Action Research Consortium (ADA-PARC) Report.

On June 22, 1999, the United States Supreme Court held in Olmstead v. LC that unjustified segregation of persons with disabilities constitutes discrimination in violation of Title II of the Americans with Disabilities Act, the ADA. The court held that public entities must provide community-based services to persons with disabilities when such services are appropriate, affected persons do not oppose community-based treatment, community-based services can be reasonably accommodated taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity.

So today's webinar will examine what the data says is happening nearly 18 years after that decision. The Americans with Disabilities Act participatory action research consortium, or ADA PARC, a federally funded research project examining participation disparities experienced by people with disabilities post ADA and Olmstead, has assembled some nationally recognized speakers today to present the issue in a few ways. I want to acknowledge the funding of the ADA-PARC from the National Institute on Disability, Independent Living and Rehabilitation Research. And these are the players of the ADA-PARC. Most of the regional ADA Centers that provide training and technical assistance and the ADA National Network, and some of our research partners there at the bottom, TIRR Memorial Hermann, University of Illinois Chicago, Syracuse University, the Center on disability at the pub lition health Institute, and the University of Northern California. -- at the public health Institute, and the University of Northern Colorado. And also an acknowledgment of a list of individuals who have worked on the ADA-PARC project and are acknowledged here. And I will spare you reading every one of them, but you can look at them as you would like.

So let me give you some background about the ADA-PARC. The purpose of the ADA PARC was, as noted there on the slides, to collaboratively examine the participation disparities experienced by people with disabilities post ADA and Olmstead. And we wanted to identify and examine key environmental factors that contribute to these disparities. We also wanted to benchmark participation disparities and highlight promising practices at the state and city levels. And finally, to action plan some strategies for dissemination and utilization of the findings to be used by ADA Centers and others in the community in capacity building and systems change and initiatives therein.

We initially established a series of cities in the first seven ADA Center regions for which we would develop the ADA, and this is a listing of all those cities on the right-hand side and the states that they are representing.

The ADA-PARC took the initial step to collect this existing data that we assessed were indicators of the three main areas of disparity and presented it on our website at adaparc.org. The data are presented there as maps and tables, and we are going to concentrate today on community living, which is the first one there, which looks at issues around community versus institutional living, HCBS spending, and Money Follows the Person transitions. There are also areas of participation disparity areas that we looked at in terms of community participation and work and economic participation.

Today's discussion is going to focus on community living aspect of the ADA-PARC data, and before we get to our main speakers, let me just describe what's available on adaparc.org for community living. On this slide is the first page of the community living indicators page of the adaparc.org. I realize this is an image and may not be visible to everyone, so let me quickly read it through so you get a sense of what community living indicators cover page says. It says

A basic goal of people with disabilities and an underlying concept of the Americans with Disabilities Act is equality and the freedom to choose to live independently in the community. One demonstration of this was the 1999 Supreme Court ruling in the Olmstead case, which found that institutionalization of individuals who are able and want to receive care at home and in the community constitutes discrimination under the Americans with Disabilities Act.

In this section of the ADA-PARC webinar, we provide indicators that can be useful in determining whether people with disabilities are living in the community opinion community living section includes measures on Where people with disabilities living in the community, and there's three indicators there, Percentage of People with Disabilities Living in an Institution, Percentage of People with Disabilities Living at Home, and Percentage of People with Disabilities Living in Other Group Quarters. And also programs and spending for community living, and these are -- have four indicators, the ratio of home and community-based services (HCBS) participants to total long-term support services, or LTSS; the ratio of HCBS expenditures to total LTSS; and the number of persons on Medicaid 1915c HCBS waiver wait lists; and the number of Money Follows the Person transitions since inception.

So as a prelude of going to our speakers who will talk about the last four, let me talk about the first three of those indicators. We can understand whether people with disabilities are living at home or in their community by looking at data on whether such people live in institutions or not. This is important because Medicaid, the healthcare program for people who are poor and have a disability, ordinarily pays for persons who meet certain disability criteria to live in an institution, such as a nursing home, but not necessarily to live at home. To find out the percentage of persons with disabilities living in an institution by state, we use the American Community Survey, which is an ongoing statistical survey conducted by the U.S. Census Bureau that samples a small percentage of the population annually. This measure allows us to know which states are doing well in helping to keep people with disabilities out of institutions and at home and in the community.

So looking at the map, average state percentages from 2010 to 2014 people with disabilities living in institutions ranged from 3.1% for Arizona and Nevada to 9.2% in North Dakota. Many western and southern states have lower percentages of people with disabilities living in institutions. Statewide comparisons here are useful because states with lower percentages may have policies in place that help more persons with disabilities stay at home and in the community and out of institutions compared to other states.

Now if we look at the second indicator, looking at the percentage of people with disabilities living in the home or community, the state percentages from the ACS averaged over the five-year age range -- sorry, the five-year range of 2010-2014 ranged from a high of 96% in Nevada to a low of 87.2% in South Dakota. These figures contrast with the previous map, living in an institution, with western and southeastern states, such as Arizona, Nevada, New Mexico, South Carolina, and Alabama having a high percentage of their citizens with disabilities living at home, and with central northern states such as North Dakota, South Dakota, and Minnesota having some of the lowest percentages.

Finally, we can look at percentage of people with disabilities living in other group quarters. Other than living in an institution, such as a nursing home or at home, individuals with disabilities may also live in residential facilities, such as assisted living centers and other group homes. These living arrangements are classified by the U.S. Census Bureau as "other group quarters," and they make up a significant percentage of disabled living arrangements in the nation. From 2010 to 2014, the average percent of people with disabilities living in group quarters range from a high of 5.8% in the District of Columbia to a low of .7% in Arkansas.

The ADA-PARC is also developing benchmarks, as I described earlier, and what will be coming to the website soon, but this is an example of what our benchmarks will be looking like coming to the community living indicators. So you can see that some of the best states have a summary score across the indicators, and those tend to be in the west, Alaska, Oregon, Arizona, Hawaii, Nevada. Some of the worst states, Kansas, Connecticut, Iowa, North Dakota, and Utah are quite low.

ADA-PARC is also conducting individual community living perspective through some interviews. We've done this primary data collection with 104 interviews of people who have transitioned out of nursing homes and institutions to the community via the Olmstead initiative. And we've been comparing participation levels and needs and issues in nursing home versus community and rating levels of participation in the community using the Kessler National Organization on Disability and Harris questions, and also qualitatively describing transition and trajectory over time.

So that is what the ADA-PARC has been doing. If you have any questions about the ADA-PARC or the community living data on our website, here is my contact information there, Lewisk@ADAPacific.org. And before I now turn it over to our speakers, I want to remind you that if you do have questions, as the speakers are going through their presentations, please go ahead and enter them into the Chat window, and we will read them off and answer them together verbally at the end.

Our first speaker today will be Charlene Harrington. Dr. Harrington has been a professor of sociology and nursing at the University of California San Francisco since 1980. She was elected to the American Academy of nursing and the Institute of Medicine, now the Academies of Medicine. Her research has included designing and managing a model California long-term care consumer information system website, setting state Medicaid home and community-based service programs and policies from 1994 to the present, and directing the National Center on personal assistance services for ten years. As well as assisting with a new community living policy center. She has testified before the U.S. Congress on long-term care research and policy, written many articles and books on nursing homes and long-term care, and lectured widely in the U.S. and internationally.

Dr. Harrington will review the online survey certification and reporting data called OSCAR, and its replacement, the certification and survey provider enhanced reporting, or CASPER system. These are administrative databases of the Centers for Medicare and Medicaid Services that support the survey and certification function of institutions, and she will also review the CMS nursing home compare five-star rating system and its available quality information on efficiencies, staffing and quality measures. Charlene, I will turn it over to you.


Okay. Thank you very much, Lewis. I am going to be reporting on trends in nursing facilities, staffing, residents, and deficiencies in the U.S.


I am sorry, I need to stop you, Carol, because we are getting feedback from your computer, I think. Are your speakers off on your computer?




Lewis, are you hearing that feedback?


I am not.


Okay. Go ahead.


Okay. So this is a report that's going to be released very soon by the Tyson Family Foundation, but I will also be including some other data on nursing home information.

The number of nursing home residents has gradually declined over the past 20 years, and the number of beds have declined. And this decline has continued since 2009. Even though the percentage of the population aged 69 and older has increased significantly. As the demand for nursing homes have declined, the occupancy rates have also steadily declined from 84% in 2009 to only 82% in 2015.

The nursing home occupancy rates vary widely across state, with the lowest percentages shown on the map in the light colors, and that's occupancy rates less than 75% in Texas, Oklahoma, Arkansas, Louisiana, and also parts of the Midwest, including Oregon, Idaho, and Montana. So these states appear to have an excess supply of nursing home beds.

One of the main changes that has occurred in the past decade is the increase in Medicare admissions to nursing homes for short-term rehabilitation care. And the expenditures by Medicare have also increased. Medicare is for individuals that are aged and disabled. The states with the darkest color have 2.5 admissions for every bed, while the states with the light color are 1.2 to 1.5 admissions per bed. So this shows that Medicare residents frequently are -- go into nursing homes, but they do not stay for a long time period. Usually about 30 days.

The next slide shows the distribution of nursing facility residents by primary payer. In 2015, 62% of residents were paid for by Medicaid for low-income people, 14% by Medicare, and 24% by private insurance and out-of-pocket payers. So even though Medicare is paying for more people to go into nursing home, the overall percentage at any given point in time has remained about the same.

This figure shows the share of nursing facility residents paid for by Medicaid. The states with the darkest blue color had more than 70% of total residents paid for by Medicaid. Of these states, Louisiana, Mississippi, Georgia, and West Virginia. If general Medicaid funds to states were to be cut by federal government, the greatest financial impact would be on states with the highest percentage of Medicaid nursing home residents.

Now turning to the issue of what type of residents are in nursing facilities, some residents are admitted with low care needs. In 2010, states with the darkest color had 19% residents with low care needs who could perhaps live at home or in less restrictive settings if they had adequate long-term care support services. This includes Wyoming, Illinois, Missouri, Oklahoma, Louisiana, and Connecticut.

A growing proportion of nursing home residents are under age 65. States with the darkest color had 19% or more of residents under age 65 living in nursing homes in 2015 who could perhaps be living at home or in less restrictive settings. These states include California, Nevada, Utah, Arizona, Missouri, Illinois, and Louisiana.

Percentage of persons with developmental disabilities living in nursing facilities have declined from 2.7% in 2010 to 2.2% in 2015. As states have developed more appropriate services in other settings or at home. At the same time, individuals with psychological diagnoses or mental health needs have increased from 24% in 2010 to almost 32% in 2015. The concern is whether these individuals are receiving appropriate services and whether they could live in less restrictive settings if they had long-term care services and supports.

Now, looking at the types of nursing facilities, these have changed over time. This slide shows the percent of for-profit nursing facilities have declined steadily from 26% to 24% in 2015, while the for-profit ownership has increased.

The percentage of for-profit nursing facilities vary widely by state. Seven states shown in the dark blue have 80% for-profit nursing facilities compared to states that spent less than 50% -- that had less than 50% for-profit ownership.

Nursing facilities chains have gone since 2009. Currently chains own or operate 56% of all nursing facilities in the U.S. in 2015. The 16 states with the darkest blue color had 65% or more facilities owned by chains. 12 states in the white color had less than 50% owned by chains.

One of the strongest predictors of nursing home quality is the nursing hours that are provided to residents. This figure shows that the total nursing hours -- which is the dark bar -- has increased from 3.9 hours per resident day in 2009 to 4.1 in 2015. The RN hours has increased from a .7 hours per day up to a .8. So there's been a steady increase in nursing hours, which is a very good thing.

Although the hours have increased, almost half of nursing homes have very low staffing, and 25% have dangerously low staffing in 2015. States with white or light blue colors have lower than recommended average staffing levels, and that includes New Mexico, Georgia, South Dakota, and Illinois. Whereas states in the darkest blue color had higher staffing hours per resident per day.

We know that staffing hours vary by ownership group, and this figure shows the differences across different types of owners. Only nonprofit and government nursing homes have close to the level of staffing recommended by experts, which at a minimum is 4.1 hours per resident per day and .75 RN hours. For-profit chains had significantly lower staffing, and they also had more at the efficiencies on average, which is not shown in this figure. But we know from other research. So this figure is from 2003 to 2009. But the most recent data show the same patterns.

Now, turning to deficiencies which are a measure of quality of care, nursing facilities in the states with the darkest blue color have the highest average number of deficiencies. These are violations of federal regulations that are issued by states on annual inspection and complaint investigations. In states with the dark blue color, which are mostly in the west -- western part of the United States, appear to do the better job of enforcing standards than states that have the light blue or white colors. These states are primarily in the south and the upper northwest. Although deficiencies -- having fewer deficiencies could indicate better quality, there's no evidence that these states have better quality of care. In 2015, the most common nursing home deficiencies were issued for failure to meet nursing standards for infection control. Almost 50% failed to do that. The other frequent deficiencies are failure to prevent accidents, poor food sanitation, and 36% of nursing facilities had deficiencies for inadequate quality of care, and almost 29% for giving unnecessary drugs.

So in summary, we see the trends that nursing home occupancy has steadily declined, even though the population 65 and over has increased, while Medicare short-term rehabilitation use has steadily increased. Medicaid continues to be the major payer for nursing facility residents. Some residents in nursing homes have very light care needs, are under age 65, and have special needs for mental health services. The for-profit and chain ownership has increased, and the research shows that these types of nursing homes have lower staffing and poorer quality in general. Nurse staffing levels, which are so important, have improved, but they are still very low in about half of the nursing homes and many states. Overall, the quality of care continues to be a problem throughout the states, and enforcement varies widely across states.

So thank you very much.


Thank you, Charlene. That was great. And Charlene has done an incredible job of laying the foundation here in this talk about understanding nursing homes and situations in nursing homes and institutions and the issues that arise.

Our next speaker will be Steve Eiken, a research manager for Truven Health Analytics, now part of IBM Watson Health. Mr. Eiken has managed data analysis, program implementation, and systems improvement projects for state and federal agencies since 1999, with a focus on home- and community-based services. He is the lead author of the annual Medicaid long-term services and supports data reports. Mr. Eiken has written dozens of reports describing promising practices to improve long-term services and supports with topics including comprehensive systems reforms, rebalancing, Money Follows the Person, and services for people with autism spectrum disorders. Medicaid long-term services and supports have undergone a profound transformation over three decades from an almost inclusive emphasis on institutional services to the current reality in which home- and community-based services, or HCBS, are a majority of long-term supports and services expenditures. States continue to improve their long-term supports and services systems to reflect individuals' preference for community living. If you examine the evolution of Medicaid LTSS and present the latest available data on Medicaid LTSS expenditures and beneficiaries. Steve, over to you


Great. Thanks, Lewis. Appreciate your mentioning that we changed our name. We have been purchased by IBM, and we are part of the IBM Watson Health business now. Those of you who have known our work for a long time, you've heard us under names from Medstat, Thomson Reuters, Thomson healthcare, and Truven. Now we are going to transition. We are still using the Truven Health name, but we are now also part of the IBM Watson Health business. And there's some exciting opportunities to work with the rest of the company. So as Lewis said -- and he did a great job of explaining this in his introduction to the whole webinar -- historically, Medicaid had an institutional bias, and it still does have an institutional bias, as Lewis said, where institutional services, in nursing homes, in state centers, state hospitals for people with mental illness, especially for older adults and children, those are entitlement services. Nursing homes are mandatory service in Medicaid. The home and community based alternatives are typically optional services. Home health is the exception. But it's often used in a post-acute manner. So home services or small group settings are optional services in most cases and in many cases not an entitlement. Now, the bias has decreased over the years, as a practical matter, and we can see that in this chart that trends data for more than 30 years. First I want to thank the Centers for Medicare and Medicaid Services for funding this series of reports. We have -- between my boss and myself, we have done these reports for more than 25 years CMS has supported them for more than a decade. So we have a strong sense of trend data for expenditures. We have three years of data on beneficiaries now, so we are building a trend line with beneficiaries as well, so you can see progress over time, and I will share with you some of that progress and some of the trends over time as we proceed.

The balance between institutional and home and community-based services has shifted significantly since 1981 from less than 10% of spending in the early '80s. Nowadays, HCBS is 53% of expenditures, and that's 2014 data is the latest data we've published. I also want to thank Audra Wenzlow, who is the author of the report that summarized the years of data we have at this point. I want to thank her for her help in making this data meaningful and helpful.

I want to discuss all of these exspendtures are federal and state, Medicare being a partnership. We count total expenditures, which includes the federal and state share. So the federal commitment will vary by state based on what the federal percentage is for that state.

So if we look at the next slide, the evolution toward HCBS, if you look backwards, it looks like a steady slope. Generally steady progress toward increasing HCBS, getting services more to the home- and community-based options that the vast majority of people prefer. But if you look at this slide, you can see it's not something that necessarily just happens organically. It's the result of policy and legislative changes that have supported this expansion and enabled it to continue. I won't go through the full list, but you can see the Olmstead versus L. C. Supreme Court decision that Lewis mentioned in the introduction; the Americans with Disabilities Act itself in 1990; the establishment of Section 1915c waivers in and of themselves. Even the Affordable Care Act and the Deficit Reduction Act legislation passed during administrations with both parties have had an impact on this larger trend.

If we look at the next slide, this slide shows expenditures adjusted for inflation, and we can see that institutional expenditures have stabilized. The highest line is total LTSS, which tends to climb steadily upward. It's kind of flattened since 2010. I don't know if that flattening will continue. There's one state that really had a drop that I think was a one-time situation. So you might see that upward trend again with total LTSS. With institutional services, the line with the blue squares, you can see it trends upward until 2002, and then when controlling for inflation, institutional expenditures have actually decreased since that year. 2002 was the year of the highest number of Medicaid-funded nursing facility residents, so we think that that's a main reason for that decline after that time period. And you can see that steady rise of community-based services.

And just for the data nerd, inflation adjustment we used was the gross domestic product deflator, indication over the full economy. It's a pretty conservative indicator, so all these lines would have higher slopes if we used a different indicator, such as the Consumer Price Index, which is more individual spending and didn't seem as appropriate for government-funded services.

This table shows the expenditure trends in five-year periods. It's the average rate of growth for in most cases five-year periods. You can see the same pattern that I just described.

You can also see that all -- since the early '90s, the trend has been toward less overall expenditures increase. For both total LTSS, for HCBS, and for institutional services, which now are actually declining when you control for inflation. Since 2011, had there's been a flat trend for total expenditures, but even back to the late '90s, it's been a slow growth rate.

Now, a majority of HCBS are funded through Section 1915c waivers, which passed in 1981. You can see 51%, which is actually the lowest percentage we have seen in our years of data. Part of that has been the rise of managed care. If you see the next few items here, we see personal care at 18%; home health at 7%; and -- no, home health at 6%. I got these backwards. Then 7% is for HCBS for managed care authorities. I want to make sure we are clear what that is because the name,s not all managed care because managed care actually could permeate all these different types of HCBS, but it's particularly HCBS that's authorized that's not authorized by these other authorities. So if you have a managed care program like Wisconsin's Family Care or Minnesota's M show, that is part of the 1915c waiver, we include those expenditures under 1915c waivers. But if it's purely -- if the state, say, removed their 1115 waivers, like Vermont and Hawaii for most cases and Rhode Island have ton, and Arizona is another example, those HCBS under those be Section 1115 waivers are counted under HCBS managed care waivers, so that's groing to 7% of the total home and community based services. It's a growing portion of those expenditures.

The next slide shows the distribution of institutional expenditures. Not surprisingly, nursing facilities are the bulk of institutional LTSS expenditures at 77%. Also, intermediate care for individuals with intellectual disabilities. Mental health facilities, this is disproportionate (Inaudible) and for payments for children under the age of 21 and adults age 65 and older. It's about evenly split between those two types of payments. The 1% for institutional MLTSS unspecified, that is for spending that's reported (Inaudible) there's special reporting for managed care payments that states participant in the incentive program have had to use, and it's required for all states starting in 2016. States break out their managed care spending between acute care, institutional LTSS and noninstitutional LTSS. When we receive that data, we use it but don't necessarily know what type of institutional spending it is. So that's 1% of institutional LTSS, and it's also part of the HCBS managed care authorities that we see in that 7%.

Now we'll move on to beneficiaries. We have less historic data, but the current data I think is pretty interesting. It's good to see the contrast between the expenditures and beneficiaries. The most recent beneficiary data we have so far is 2012. Two-thirds of the beneficiaries received home- and community-based services. If you count people who receive both, this might be someone who benefited from the Money Follows the Person program, was in a facility and then moved to the community. It could also be a person taking a different pathway, being in a waiver and having their condition worker and being admitted to a nursing facility. If you take both of those items into account, 70% received HCBS, about one-third received institutional services. The balanced percentage, the percentage that's greater here because HCBS has a lower average cost than the institutional services. And if you add these numbers up, we have about 5 million people that received Medicaid LTSS over the course of a year. Really about 4.8 million, but we know we are missing some managed care data, so you know, it's pretty fair to round up to 5 million people receiving Medicaid LTSS in a given year.

A majority of these beneficiaries are under age 65. We have 45% in that 65 and older age range, almost as many in the 21 to 64 age range, 39%; and 16% of beneficiaries under age 21. Now, we also break out balances by subgroup. You know, these categories are not very clean because people can fit within multiple categories. We are basically making some reasonable assumptions of, you know, what diagnoses tend to be associated with different program authorities. For example, personal care is more commonly used among older adults and people with physical disabilities than other types of disabilities. It's not inclusive, but it's a general pattern. Similarly, rehabilitative services are more commonly used for mental health/behavioral health services.

So these are approximations, but they are using approximations. If you look at the blue line, people with developmental disabilities has had a stronger balancing statistics or expenditures since we have been able to track data, which is 1995. 75% of expenditures targeted to people with intellectual and developmental disabilities was for community services. We don't know the number, but a fair number of that amount was for what Lewis showed in the census data earlier as the other group quarters, you know, a lot of small group home type, small group settings are used in the 1915c waiver, so those can be used across populations but tend to be more common among people with developmental disabilities. And I think that's part of the factor for the higher balance.

If you look at older adults and people with physical disabilities, we abbreviate AD for age and disability, you can see that general upward trend going up to 41% in 2014. And then for behavioral health services, for people with serious mental illness or serious emotional disturbance, we didn't have the rehabilitative services data until 2010, so the expenditures were really underreported because it was really just the mental health facility data for the most part. Once we have that data, we have a benchmark of 28% in 2010, and we've seen an upward trend to 41% in 2014.

The balance not only varies by type of diagnosis, but also by age. Younger folks tend to be served in the community more than people age 65 and older. Folks under age 21, 12% of those folks in institutional settings, mostly residential facilities for -- residential treatment facilities related to mental illness. And a larger sum for home and community based services. For adults age 21 to 64, you can see it's 18% institutional only and only 4% receiving both. And it's about even for people age 56 and older. They are still more likely to receive HCBS, but it's by a small amount.

You can also see the balance vary by state. Along with the national policies I mentioned earlier, state policies matter when it comes to the distribution of resources for institutional and community-based services. There's quite a wide range from Oregon at 79% to Mississippi at 27%, and one reason I call out Mississippi is not only that they have the lowest percentage, but that percentage is going upwards. We have heard great things about work that they have been doing to improve the balance. I hate to just pick on them for having the lowest percentage because they are actually making good progress, and I think in future years we'll see that percentage continue to increase. It's about an even split in terms of how many states have expenditures over or under 50%. 25 states and DC have HCBS above 50%, 24 states below that amount. And this is all 2014 data.

Now, if you look at two-year progress, we highlighted ten -- this was an indicator for states making recent progress. If you look at one year of data, there tend to be little quirks in state reporting that can highlight a state -- you know, a state might have expenditures go up, and then you go back down. So we use two-year trends to try to smooth out those one-year quirks. So these ten states show the greatest percentage increase in HCBS expenditures from federal fiscal dwreer 2012 through 2014. The first seven of these, New Jersey, Ohio, Missouri, Iowa, Texas, New York, and Arkansas, were all participating in the Balancing Incentive Program. Most of those states started participation during this time period. Only -- I think -- I forget which state started in 2012, but for the most part they joined in 2012 or 2013, so it's not necessarily an indicator that the Balancing Incentive Program made that impact. It might be a correlation of states that want to improve their system also want to participant in the Balancing Incentive Program. We'll see the full impact, I think, longer term, partly because states will have been involved in that program. Also because the structural changes in the Balancing Incentive Program provided states a financial incentive to adopt practices that have worked well in other states, such as having a no wrong door for accessing services, a standardized assessment, you know, those practices will also -- should also help the states in the long-term with improving access to community services. So we may well see progress for a longer period of time.

Now, I have a slide for questions and discussions, but I think we will save that for everybody, after Carol is done, and we can have questions from everybody. Here's my contact information, and the link is kind of long. I don't want everybody to scramble and write that down. If you go to Medicaid.gov and you search that site for LTSS expenditures, you'll be able to find all of the reports that lead to this data, and certainly please let me know if you have any questions about the data.

And I think we can pass it on to Carol. Lewis, I will let you make the transition.


Great. Thank you so much, Steve. Appreciate that. And so that was a great follow-up. So we have the understanding of nursing homes, and now we have the clarity about Medicaid long-term supports and services and the, you know, changeover in potential balancing going on there, more heading toward possibly home and community-based services from what Steve showed us. So that's great.

Our final speaker today is Carol Irvin from Mathematica Policy Research. Dr. Irvin's career is focused on assessing policies and programs related to healthcare access, particularly for vulnerable populations. She currently directs two national evaluations of Medicaid programs. Since 2007, she's directed the national evaluation of the Money Follows the Person demonstration Medicaid program that seeks to help states develop and strengthen their approaches to transitioning people from institutions to community-based care. She also directs Mathematica's evaluation of four different types of Section 1115 Medicaid demonstration programs. But today Carol is going to present the latest findings from the national evaluation of the Money Follows the Person demonstration and using data from -- reported by the states and from national Medicaid administrative data, she is going to provide information on how the Money Follows the Person demonstration has grown, from where beneficiaries participate, and the types of outcomes from the participation. The key outcome has been to demonstration whether the Money Follows the Person demonstrations are transitioning people who would not have transitioned otherwise and what their post-transition outlooks are like, particularly how their quality of life changes after moving to the community. Carol, on to you.


Thank you, Lewis. I really appreciate it. And thank you, everyone, for attending the call today. As Lewis said, I am here to talk about the latest Findings from the National Evaluation of the Money Follows the Person Rebalancing Demonstration, which is a program that has been around since 2007. It was actually in March of 2007 when we entered into a contract with the Centers for Medicaid and Medicare Services, or CMS, to conduct this evaluation. So we just recently celebrated our tenth year anniversary studying this program.

I want to start not knowing my audience perfectly well, I wanted to start with just some basic background so everybody on the call has the basic understanding of what this program is about. As Lewis mentioned, MFP is about helping states figure out how to reduce their reliance on institutional care. It's also here to help them develop community-based long-term services and supports and preference to institutional care. And basically, this program is about giving people with disabilities more choice about where they receive services and to allow them to participate as fully as possible in the communities.

This program has been popular. Most states have taken up the demonstration. The map that I am showing you right now just shows that not only which states are participating in the demonstration but also which cohort. Most states got their first grant awards in 2007, but we have had some grant awards that occurred in 2011 and 2012, and states like Montana, South Dakota, and Alabama are the states that are the youngest, the ones that started their programs most recently.

So MFP programs actually have two components to them. One is the Transition Program. That's the one that we've kept track of this program, that's what you hear about most frequently. But there is also a rebalancing program, which I will discuss in a little bit. But I always start with the transition program, and as of the end of 2015, the participating states, 44 states, which includes the District of Columbia, have transitioned more than 63,000 people since the inception of the program, and I have seen the data for 2016 recently, and essentially, what you see -- what they did in 2015 is what they were able to repeat in 2016 as well. So what this graph shows you, the big long upward sweeping line is the cumulative total number of transitions that have occurred, and then we have two other lines. The middle one, which is made up of little triangles, is the number of current participants, the number of people they have served in each six-month cement. And then the bottom line represents the number of people they transitioned during that six-month period. So in 2015, the states transitioned a little over 11,000 individuals that year.

Now, the transitions are not evenly distributed across the states. We have a number of states that are very small in terms of the number of people that they have served. South Dakota and Alabama, as of the end of 2015, were the smallest of the programs. But then we have Texas on the other end of the spectrum, a program that has transitioned now more than 10,000 people.

And the volume of transitions are concentrated among seven states in particular that account for more than half of all participants. That includes California, Connecticut, Maryland, Michigan, Ohio, Texas, and Washington.

Now I'd like to put the volume of transitions into some perspective. And as part of our evaluation, we have been tracking the size or the number of people actually eligible for this program, which is about a million people in any given year. And so since about 2010, the demonstration states have -- and their transitions have represented about 1% of the people eligible for the demonstration during a year.

Now, if you are someone -- depending on what your perspective is, this may be a conservative estimate. And I've had arguments about this estimate with my colleagues here at Mathematica. If you are someone who believes that there is a group of people for which institutional care may be the preferred setting, then this is definitely a conservative estimate because it includes everyone who has met the length of stay requirement for MFP. To be eligible for MFP, you have to be in institutional care for at least 90 days.

And some of my colleagues would say that there is a group of people -- and they usually point out people with severe dementia -- who may not be served as well in the community as they could be in a facility setting. Even if we take account of those individuals in our estimate, MFP is still a small program. But what our estimate represents is that everybody who could possibly be served in the community.

The other way I look at it is related to the amount of funding set aside for this program. When Congress set up the program, they initially allotted $2 billion for MFP transitions, and then when the Affordable Care Act was passed, they doubled that to $4 billion. So the $4 billion, though, is to be allocated over a minimum of ten years, and they started allocating funding in 2007. The last allocations were given out in 2016. States actually have until 2020 to spend their entire allotment. So that's actually the $4 billion now is getting spread over 14 years. And (Inaudible) for 44 states and the District of Columbia. So when you think about the services Steve was just talking about, this ends up being a fairly small amount of money actually put aside. So when you look at it in that regard, then the number of people they transition is actually pretty impressive.

Now, over the years, I have been asked Carol, what are the ingredients of a successful MFP transition program? And at various points during our study of this program, we have gone out to talk to program administrators to find out what they think from their perspective makes for a strong transition program. And some of the common themes we've heard over the years is one, we've got to have strong referral networks, which require strong partnerships with the state agencies that serve the targeted populations. Outreach has to happen on an ongoing basis. You can't just do it once, put some information out there into the world, and expect people to remember and come to you for assistance. You've got to keep conducting outreach all the time. You also have to maintain good working relationships with the facilities, and this can be tough sometimes because when you come -- when a transition program approaches a facility, they can feel fairly threatened that they are going to lose their residents. We -- in our research, we have also found that having strong partnership with housing agencies is key as well to these transition programs. If you are on Medicaid, you have low income. And if you enter institutional care, it doesn't take very long for you to be in that facility before you lose your housing. Can't keep up with rent payments. And so many of the individuals who end up long-term in facilities tend to have lost their connection to any housing in the community and they need help establishing that.

We have also heard and seen that strong partnerships with providers of support services, those are the providers that will be serving individuals once they are out in the community, is also very important to a strong transition program.

Most states and most MFP programs, though, have continued to struggle with an insufficient supply of affordable, accessible housing. I think that is a chronic and going to be an ongoing issue for every state. States are also noting that, you know, they could transition more people if they had more community-based providers and more direct service workers. And then also, many of the states learn just how challenging it is to serve people in facilities who also have mental and behavioral health conditions as well. A lot of times transition coordinators don't have a lot of experience with this kind of population and they've had to learn by doing. Last year we did a focus study on transitions for working-age adults, so these are people under the age of 65. Because MFP seems to be doing a particularly strong job with this population. And when we were first talking with grantees about this, a lot of them scratched their head and said, well, you know, we don't understand why we are doing better with younger adults because very few of our procedures/processes are age based. But as we talked with them, they did note things like younger adults tend to have stronger networks of peers and informal supports. You know, we heard many times someone who would be able to transition out and say, you know, I've got other friends who, you know, they are not elderly, they would like to get out to, and now I am going to help them get out. They also tend to be very highly motivated to make the move.

We've also noted that with this population, there seems to be particularly strong transition coordination services for them and flexible community-based services has also been important for this population. And then in a couple of states that we talked with, they said you know, we have been working really hard at integrating mental health services with other community-based providers, and as we've done a better job with this integration, we think we've been able to do a better job helping adults under the age of 65, particularly those with behavioral health conditions.

So as Lewis hinted, one of the key questions that we have been researching for the Money Follows the Person program is whether or not the transitions that have occurred have actually increased the rate of transitions from facilities into community services. You know, when we look at the data, we saw people transitioning from a facility into HCBS before MFP ever began. And so the question is, is with MFP, can states transition more people? And over the years as we've studied this, one thing we've learned is that the results are very sensitive to which states are in our analysis and how many years we are able to include. And it's also sensitive to the methods that we use. So that, in fact, right now we say it's -- we can't answer this question conclusively one way or the other. And that any finding that we've been able to produce so far we don't think is very robust.

However, one thing we have been seeing in the data is that MFP participants don't seem to be like the other people who transition. And they don't seem to be particularly -- much like the people who are eligible for (Inaudible). What I mean here is comparing the full eligible population and to have lower care needs. Many times they have a lower incidence of dementia and even mental health issues.

When we compare them to other people who transition to community services, they just do it outside of the MFP program for whatever reason, we note things like they are -- MFP participants have had longer stays in facilities than the other transitioners. They also are less likely to have used HCBS services before they went into institutional care. And the other interesting thing that we have seen but we can't necessarily explain very well is that MFP participants are far less likely to use hospice services compared to other transitioners. So we think that they are less likely to be near the end of life than the other transitioners are that we have been comparing them to.

So all of this I bring up because there is information there in the data that would suggest that MFP participants are different than other people who are transitioning and, in fact, these programs may be transitioning people who would not have transitioned without MFP. We have looked at post-transition outcomes, such as the likelihood people are going to remain in the community long-term, whether or not they return to institutional care, or mortality once they move to the community, and here, again, our conclusions are not very solid or robust. Many for the same reasons as why our transition rate analysis have not been considered very robust.

Other questions that we've looked at is what happens to healthcare costs when people make the transition and what happens to the quality of life. This has been a very robust result in that -- and this won't be surprising to people on this phone is that when people transition to the community, their healthcare costs, both their Medicare and Medicaid costs, decline, primarily because their institutional care costs have dropped as well.

Quality-of-life results have also been extremely strong in that the quality of life of MFP participants increases after they transition and then remains, and there's very little falloff into their second year of community living, which is what this graph is trying to present here.

The biggest -- the area where we see the biggest jump in the quality of life is people's satisfaction with their living arrangements. Before they transition, about 60% of participants are saying I am pretty happy with my living situation, but after they have been out in the community for a year, that percentage saying that they are happy with their living situation has shot up to 92%. And then the second year it drops down to about 91%. But still very high.

In this next slide, these are two other domains of quality of life that we've been looking at, only here decline, a shorter bar, means an improvement. The first one is about people's unmet need for personal care. Before they transition, about 16% told us that they had experienced an unmet need for personal care. And one year after the transition, that percentage had declined to about 6%, and two years after it's down to about 5%. And then in this last set of bar graphs we are looking at the barriers to participating in the community. Before people transition, about 49% were telling us that they've experienced some kind of barrier to participating in community life. After they've transitioned, that first year, about 33% say they are still experiencing some kind of barrier. And then two years later, 28% are saying that they are still experiencing some barriers to community life. So better, but more could be done.

I want to talk a little bit about the Rebalancing Program. As I mentioned at the beginning of my talk, states need to implement two components, a transition component as well as a rebalancing component.

When states transition people to community services, those community services that they provide during the first year of living in the community, the states receive an enhanced match from the federal government, and that enhanced funding they are supposed to plow back into community-based services. And that money is what we call the rebalancing funds, and what they do with it, that money, is what we call the Rebalancing Program.

So in this slide, it's showing the growth in the amount of expenditures the states have made from their rebalancing funds. We get this information at quite a bit of a lag so that our last data point here is from December of 2014, where states were reporting about 230,000 -- 230 -- yeah -- $230 million spending from the rebalancing funds. That was quite a large increase from what they had reported for 2013.

They still -- we are going to expect to see 2015 at an even higher rate, so the acceleration in the spending of these particular funds happen later on in the program.

What do they spend the rebalancing funds on? 16 states spend most of their funds on increasing the 1915c waiver capacity in their state, providing more slots for more people to participate in waivers. But they will also use this money to add waiver services. 11 states are using the rebalancing funds to provide housing supports. A lot of this funding is going to support housing specialists. 11 states are also reporting they are using their funds for transition services. Sometimes this is transitioning other people outside of the MFP program.

So in conclusion, I want to look a little bit towards the future because as things stand right now, MFP, the last funds, as I noted, were given out last September, and the program is set to come to a formal end in 2018. That will be the last time states can transition people. And then they have until 2020 to expend all of their grant funds.

However, I have been in conversation with Senate staff, who are indicating that they are trying to pass legislation to extend the demonstration for another five years. I don't know if they are going to be successful in this climate, but we'll wait and see what happens. So in looking toward the future and how do these states sustain their -- the games that they have made on their MFP, well, they are going to have to find ways to keep up outreach and referrals for transitions. They need to be finding ways to finance their transition coordinators. They have been doing that with grant funds. They are going have to find ways, if they are committed to doing this, to institutionalize transition coordinator positions or rely on community partners to do the transition more so than what they have before. They are going to need to find ways to keep up their interagency partnerships, particularly with housing, and finding ways to keep housing specialists in their roles.

I think other ways in which states can continue to foster a philosophy of assisting transitions to community living is through payment policies and quality/performance measures. You know, I have seen through some of my other work that there is a -- some momentum across some states to put into place value-based purchasing programs for nursing home care. It's going to be interesting to see where that all goes and whether or not those kinds of initiatives can promote shorter stays in nursing facilities and getting people out more quickly into the community.

And then I think all states are going to have to continue to work on strengthening their direct service work force and supports for family and family caregivers.

Then in my last slide here, I talk a little bit about there's some Medicaid policy going on that may or may not promote community care over institutional care. I think some of what's happening with the accountable care organizations may influence what's happening on the Medicare side. I know a lot more of what's happening on the Medicaid side, the development of health homes, PACE is still viable, and they are looking at ways to expand that program. Accountable care organizations are being developed, and I mentioned payment policies as well. So with that, I would like to conclude. Here is my contact information. Information about our work is available both on the centimeters MFP website, as well as Mathematica's website. So with that, Lewis, I would like to turn it back to you.


Great. Thank you so much, Carol. All right, everyone. So this is a good time for you, if you have not written a question, to write your questions into the Chat room, and we will get to those, we will take them in order of when you send them in.

And while you are working on those questions, I wanted to first of all, Carol stole the question right out of my mouth, which was what does the future hold, but maybe what we can do is to open that question to Charlene and then to Steve about maybe what does the future hold in terms of each of the areas that you discuss. So Charlene, do you have a point about -- to make about the future, like in terms of the nursing home data?


Well, I think you will see a continued growth in the use of Medicare nursing home services, and you will probably continue to see a decline in the number of nursing home beds. So many nursing homes are targeting their services toward the Medicare short-term residents and prefer to have services for them rather than long-term stay residents.

And we do see an excess capacity in some states, so I think those states will continue to have a decline, even though the population, of course, is aging. So I think that will be the major trend.


Okay. And Steve, do you have any thoughts on the future for HCBS and LTSS?


Yeah. You know, one thing that Carol hinted at in terms of value-based purchasing, you know, that's definitely further along in the facilities, in the nursing facility space. But a number of states are looking at that in terms of HCBS or just in terms of encouraging balancing in and of itself. You can have prodding, using -- especially managed care environments, using the managed care contracting process and using that, you know, including contract requirements that spur the system on toward serving people in the community. We are seeing that more. We are actually participating in CMS's innovation accelerator program as part of the community integration through LTSS subject matter area. There's support for states in what they call incentivizing quality and outcomes, or IQO. And that's basically working with states to move toward value-based purchasing. There's a lot to do, so I don't know if we have any states that are actually going to say, you know, boom, we have -- it's today and we have value-based purchasing. But next year, year after, I think we will see some states. And a few pioneers are there already.

The other thought I have is just generally speaking, community-based services are the norm. Living in home, living in small group settings, that's the norm. That's the expectation now. And the policymakers' attention is also being moved toward how to make sure that community is really worthwhile. And we see that in the CMS regulations on home and community-based settings. We see that in the experience of care survey that CMS has developed with Truven's support to measure the quality of the person's care. We see it in Carol's findings in terms of the quality-of-life survey. You know, it's an accomplishment to serve people where they want to be served, but it's also -- I think there's a growing push to really make sure those services are doing well for people. And I think we are going to see more work in the quality of the community environments that people are living in as we move forward.


Yeah, that's really interesting. I also wanted to point to that as well because the ADA-PARC, as I mentioned earlier, we did some interviews with individuals who are transitioning, and using that quality-of-life question about care, we were finding similar to what Carol showed, that even if you are in the community, the care that you are receiving gets rated to be higher than it is in an institution, where you have staff who's there all the time. This seemed like a counterintuitive finding, but it looks like Carol is showing that as well, and maybe you are as well. Anybody want to hazard some ideas about why the care might be better in the community than when you have staff sitting there in an institution with you?


I saw Carol's statistics, and I thought of what Charlene said about the staffing ratios. So it may well be that there are staff in the building, but they are sufficiently busy that folks are still having gaps in care. That's just a hunch. Charlene and Carol can better address that.


I definitely agree with that. We see the staffing in some many of these homes are inadequate, and as resident acuity increases in nursing homes, there's more work to be done but not enough staff to do it.


And I will just chime in. One of the other components in the quality-of-life survey is asking some questions about how you are being treated by the people who assist you with, you know, are you being treated with respect and dignity? And the information tracks in a similar way in that they feel that once in the community, working with community-based services, that they -- people are treated with more respect and more dignity than when they were in the facility setting.


Yeah, that's very interesting. I am going to ask the operator, are there any questions on the phone?


Ladies and gentlemen on the phone line, if you would like to ask a question at this time, please press the * then the number 1 key on your touchtone telephone.

As a reminder, ladies and gentlemen, to ask a question over the phone line, please press the * then the number 1 key on your touchtone telephone. I am showing no questions at this time.


Okay. That's fine. That's great. Thank you. So I wanted to give -- ah, we do have one question that's coming via email. For any of you to answer here, how the data have you shown being used by advocacy community to effect change in their states?

Let's go in order here. Charlene, do you have any idea about that?


Well, I can speak for the nursing home advocacy groups. They are definitely using the information about quality of nursing homes in terms of their advocacy efforts. But it's an uphill battle because most emphasis has been on advocacy in the community. I think the challenge for us is to be able to get the data that we have out to the advocacy groups so that they can use it.


Yeah, and hopefully that's going to be an opportunity there for the ADA-PARC data. We'll try to get as much of this data up as we can and guide people to where further data is, and hopefully that will be an opportunity. Steve, any idea about your data?


Yeah, I have definitely seen it in action with some of the states with which I am familiar. Some states have used it, and some advocacy within that state have used it. If their state is looking particularly low either in the balance of community spending or the amount of spending -- we also calculate the expenditures per state resident for each program authority for total CBHS, total -- and rank states on a per capita basis. If your state is an outlier or noticeably different from border states or whatever your state considers its peers or fair comparisons, there's an opportunity to use that data to show how your state could do things better. I have seen that in action in both directions. I have seen some states wishing they were not number one, and I have seen states, you know, knowing that they were fourth to last and using that as a spur to action. And others pushing them along the way.


And Carol, your thoughts?


Yeah, over the years I have seen our data used in two primary ways. I am also thinking that I am probably not fully aware of all the ways in which our information has been used, but I know the transition numbers get used by the advocacy community to help argue for more transitions and, you know, prodding state Medicaid programs to do more and better in that area. And then I know that the quality-of-life information gets used quite a bit. I think that has a lot of salience for people, particularly for advocates, and as a result of getting a fair number of questions about the quality-of-life data, in the annual report that we put out last year for calendar year 2014, that was the first time that we presented state-level information about quality-of-life statistics. We put it in an appendix at the back without any kind of narrative for people to use. And we have a report for 2015 that's been in clearance now for quite some time that we are hoping will get out soon into the public domain, and that will have updated information in there as well.

I think the other way in which I have seen it used is, you know, this becomes anecdotal information, but we will frequently put out a report and then somebody from a Center for Independent Living will contact me and say, you know, what you said here resonates with what we are finding in our state, and you know, here's some more anecdotal information that goes along with that.

So I know that it's -- our reports are being read and people are getting something out of them.


Okay. Great. And we've got a specific question for Carol that came in. Do you think that CMS will continue to provide funding for transformation grant of the type previously provided, given the current administration? And what about including the new HHS administration?


Yeah, I am not sure. I have no inside information. I don't know anything more than what's out in the public domain. I know that there's a lot of staff there who are dedicated to this area, and there will be a lot of work around managed care and MLTSS, I know that, and trying to make those programs stronger. But I don't know about the transformation grants, what the future holds for them. Sorry.


Okay. And we have a question here for Steve. Do you have a sense of how effective community first choice has been in providing HCBS and the effect of rollback of this ACA-related program would have on the states? And maybe you can give a quick run-down of what that is for some people who might not know.


Oh, you bet. So community first choice is an optional -- it's a new state plan optional service that was set up in the Affordable Care Act, and it's a multiservice benefit. I forget the precise nature of the benefits, but it includes attendant care. I think there's a requirement for states to offer participant direction. You know, if you go to Medicaid.gov and search for community first choice, you will get some good information on it. It has some unique supports for transition services. I know they can pay for the first month's rent, which no other program authority can do. So there are some unique benefits to community first choice.

In our expenditures data for the most part, whenever we see a state adopt community first choice, and the spending increases there, we see a con cometant decrease in expenditures in another program authority. You know, in California, that state used it to provide a broader benefit than their personal care program. So people were able to get a little more robust benefit, but there wasn't a significant increase in overall HCBS spending. In Oregon, there's a substitution effect for 1915c waivers. Their overall spending did go up, so I think there were some impact on their waiver waiting lists as a result. Maryland, I think they came in with a new benefit. I think most states can repurpose an existing benefit. Maryland used it to expand access to services. It was more of a new benefit there. There's actually I think it's New York is doing an evaluation of first first choice, and the findings -- their findings are available, you know, if you go to Medicaid.gov and search for community first choice, you could find that information. I think the reports to date don't cover a lot of the implementation time span, but for the few states that have adopted it -- and it's a pretty big chunk of expenditures because California is involved, and starting in 2015, New York is going to be involved. So it's a big number. But in terms of number of states and overall impact, it's been a relatively small impact to date, and you can get more information about that from New York's evaluation.


All right. Well, it is the bottom of the hour, and I want to be respectful of everyone's time, so I think we'll end there. And I want to thank Charlene Harrington, Steve Eiken, Carol Irvin for your time and your presentations. It was really great. And I believe at this point, Robin, I will turn it back to you to do any wrap-up that you want to do.


Great. And thank you very much, Lewis, for your moderation of today's session and our presenters for spending their time with us today, imparting this very critical, important information. You will receive an email shortly after the conclusion of this session which will provide you some instructions related to how you can access the evaluation for today's session. We really encourage you to participate in that process as your feedback is very valuable to us. It will also give you information about how to obtain a certificate of participation for today's session. This session was recorded and it will be made available as an archive on our website, as I indicated earlier during the instructional phase. The recording should be up in the next couple of days with the transcript, edited transcript, available in approximately seven business days. The handouts from today's session were available prior to the session but are also going to be available on the archived section of the website, again, www.ADA-audio.org under the archives section, you will be able to find that information. But again, watch for the email which will have more details, and we really, again, appreciate your completion of the evaluation for us.

We will not be having a session in May. May is a big busy month for the ADA Centers and the national network, with the ADA national symposium, which we are hosting here in Chicago this year, so we apologize that we will not be having a session for May, but please watch for future postings. We will resume again in June. Thank you everyone. To access the system, all you need to do is hang up the telephone and/or close your browser and/or use the file in the the upper left-hand corner and choose file, exit. Thank you, everyone. And have a good day. This concludes our program.