13:00:09 ROSA PLASENCIA: 13:00:12 Welcome, all. 13:00:15 I am happy to welcome you to our webinar 13:00:18 titled 13:00:19 'Empowering Choice - Exploring Self-Direction Experiences Among National 13:00:22 Core Indicators Respondents"'. 13:00:23 This is a joint effort of several speakers 13:00:27 and associations. My name is Rosa Plasencia 13:00:30 . 13:00:31 This webinar was spearheaded by HSRI 13:00:34 (indiscernible) 13:00:35 in memory of our colleague Sarah Taub 13:00:38 . 13:00:41 We have an incredible group of speakers and I will ask them to introduce themselves. 13:00:48 VALERIE BRADLEY: 13:00:50 Hi, I am Val Bradley. The president 13:00:52 of 13:00:53 the Human Services Research Institute 13:00:55 . 13:01:04 My (indiscernible) goes back to the 1990s when we worked on the (unknown name) 13:01:09 demonstration and it has been a passion of mine ever since, so, welcome. 13:01:14 LINDSAY DUBOIS: Hello, my name is Lindsay DuBois. 13:01:18 My pronouns are she, her. I am a middle-aged white woman in my office 13:01:23 and behind me are pictures my children have drawn. 13:01:27 I am wearing a white shirt and have blonde hair and glasses. Thank you for joining us. 13:01:34 MOLLY MORRIS: Hello, I am Molly Morris, the vice presidentst 13:01:40 at Applied Self-Direction. I use she, her pronouns. I am a middle-aged 13:01:44 woman with white, blonde hair 13:01:46 . 13:01:51 I have a black turtleneck on with a floral background. Looking for to talking with 13:01:56 everyone today. ALICIA BOEHME: 13:01:57 Hi, I am Alicia Boehme 13:01:59 . 13:02:06 I am a white woman with brown hair and brown eyes and I'm sitting in my living room 13:02:13 with a couch and art and piano in the background. Good to see everyone. 13:02:18 CHRISTIAN MORAN: 13:02:28 Good afternoon. My name is Christian Moran, I am also from 13:02:32 the Wisconsin Department of Health Services I am a white, middle-aged man with a shaved 13:02:37 head and a beard. I am wearing a blue sport coat and a white 13:02:42 shirt. I am in my small, home office. Happy to be 13:02:46 here. ROSA PLASENCIA: Thank you so much, everyone. 13:02:49 I apologize, I missed my visual description. I am a middle-aged woman with light, 13:02:54 although skin, wavy hair and a blue turtleneck. I have a cold today so I am 13:02:59 sorry about that. Participants will be muted during this 13:03:03 webinar. Please use the q and a feature in the chat. 13:03:07 Toward the end of the webinar panelists will be 13:03:10 participants will be able to 13:03:15 ask and have their questions answered. 13:03:17 , 13:03:17 .. 13:03:18 . 13:03:25 Live Spanish interpretation can be accessed by clicking the interpretation button at the 13:03:30 bottom of your zoom screen which is the world icon. (indiscernible) silenced the 13:03:35 original audience (audio issues) 13:03:37 audio. 13:03:38 (Speaks Spanish) 13:03:39 . 13:03:48 Due to a recent Zoom 13:03:50 update, 13:03:53 full accessibility may not work if you are joining with a mobile devices and slides 13:03:59 can no longer be viewed 13:04:03 simultaneously via tablet or phone. Please swipe to find the ASL Interpreter on 13:04:07 your mobile device. This webinar includes polls's 13:04:10 and we appreciate your interaction throughout 13:04:12 . 13:04:19 Slides will be available on our website at a later date. Val, I will turn it over to 13:04:26 you. Thank you. VAL BRADLEY: Hi, this is Val 13:04:29 again. I neglected to say I am a middle aged woman, 13:04:33 well, no, that is not true (Laughs) I am a much older woman with red hair, wearing a 13:04:39 black sweater with white stripes. I am sitting in my somewhat cluttered office 13:04:44 with plants and bookcases behind me. I use she, her pronouns. 13:04:51 This webinar is named after a colleague of ours, a dear colleague of ours named Sarah 13:04:56 Taub. Before she passed away, Sarah was the 13:04:59 National Core Indicators Director 13:05:01 until 2013 13:05:03 when a very aggressive cancer took her life 13:05:06 , much to all of our sorrow. 13:05:09 Her mission and purpose was really 13:05:11 the central part 13:05:16 of the growth of NCI and has made it what is today 13:05:20 . She was a very fierce advocate for people 13:05:24 with disabilities and advocated for the representation at all levels 13:05:27 of the work that we do. 13:05:30 She never really that as forget who 13:05:32 were the people behind the numbers. 13:05:36 That is why we have called these webinars he Sarah Taub 13:05:40 Webinars. 13:05:41 This is what we call 13:05:47 hope you will get out of this webinar today. First, to increase your knowledge in 13:05:53 general about self-direction and people's experiences with self-direction. 13:05:57 We want to share some best practices, some exemplary practices 13:06:00 that will hopefully 13:06:03 give you some ideas about how to expand the opportunity for self-direction 13:06:08 in your states. We want to show how NCI data 13:06:11 highlight the characteristics and outcomes 13:06:13 of people who are using self-direction. 13:06:16 And then we want to speculate on some of the additional areas 13:06:21 that we really should be exploring in the future. 13:06:29 So, now we want to take a minute just to find out who is in our audience 13:06:38 and for you to give us a bit of a self-assessment about how familiar you are 13:06:44 with self-direction. We are going to Luntz launch a poll. 13:06:52 Can you describe yourselves? 13:06:57 Just check 13:06:59 whichever best characterizes you 13:07:03 . 13:07:12 OK, now we need to go to the next poll, is that right, Laura? 13:07:27 So, please rate your knowledge of self-direction supports. 13:07:30 Zero 13:07:32 being next to nothing. Five 13:07:34 being a lot 13:07:35 . 13:07:49 Great, and Laura, 13:07:51 are we ready to see the results? 13:07:59 OK, in terms of knowledge, 13:08:01 some people with a lot of knowledge 13:08:04 , 13:08:05 and a bit of knowledge 13:08:07 . 13:08:08 It looks like a fairly knowledgeable group 13:08:13 with some people still here to learn more. That is great, thank you 13:08:18 . And have about who is here, Laura? 13:08:27 We have a few people with lived experience. 13:08:30 A few more family members and advocates 13:08:32 . 13:08:34 We've got some public managers working at the state level 13:08:38 , 13:08:38 case managers who are absolutely crucial to this whole process 13:08:42 , 13:08:43 some policymakers, service providers and some researchers 13:08:45 . 13:08:47 A real, interesting, diverse group. Thank you so much 13:08:50 . 13:08:54 Let us do a brief overview of the history of self-direction 13:08:58 . 13:08:59 In the traditional model, 13:09:02 which I assume you are all pretty familiar with, 13:09:05 the public money goes directly to the provider. 13:09:09 And the services are basically driven by the case manager 13:09:12 and the service provider. 13:09:14 We call that sort of a wholesale model 13:09:17 . 13:09:17 The self-direction model is really more of a 13:09:20 (indiscernible). 13:09:23 The public funds go to an individual's support budget 13:09:26 and it is up to the individual 13:09:28 to determine which services 13:09:30 they want to purchase 13:09:32 , 13:09:34 which goods and services they want to take advantage of 13:09:38 . 13:09:38 The responsibility of forming the service packages on the individual 13:09:42 . 13:09:51 In my judgment self-direction is part of a larger human right that we all have to 13:09:57 self-direction. Which asserts that we all should have agency 13:10:01 in our lives and that we have control over the decisions that really determine the 13:10:06 course of our lowers lives. 13:10:08 Self-direction really reflects the promise of self-direction 13:10:10 by putting power in the hands of people 13:10:13 who need supports 13:10:21 (audio issues) 13:10:22 . 13:10:23 Here is a brief timeline 13:10:25 . 13:10:26 These are sort of some of the major milestones 13:10:30 over time. 13:10:33 Important to know that self-direction goes back even to 1953 in California 13:10:37 , where people who were covering 13:10:41 recovering from polio were given the ability to purchase their own 13:10:45 personal care attendants. That program is now part 13:10:48 of a huge service provided in California. 13:10:56 In the 1980s, Massachusetts and a few other states had pressure from the independent 13:11:01 living movement gave people with physical disabilities the ability to purchase their 13:11:05 own personal care attendants. 13:11:06 1995 Cash and Counseling came along which made it possible to cash out certain public 13:11:12 benefits, for older adults, people with physical 13:11:15 disabilities, to use the money to use as they wish for the services they needed 13:11:21 . 13:11:21 The amount of institutionalization among the group went down as a consequence 13:11:26 . In 1997, the (unknown name) 13:11:28 funded (indiscernible) 13:11:29 . 13:11:30 .. 13:11:31 2003 13:11:36 self-direction became a service option for multiple groups 13:11:39 through the use of HCBS waivers. 13:11:42 And in 2023, 13:11:46 a year before last, there were 260 self-direction programs 13:11:50 throughout the country 13:11:53 serving a total of 1,520,267 individuals 13:11:55 . 13:11:56 How do we know that? Because of our friends 13:11:59 at Applied Self-Direction, 13:12:01 who you will hear from next. Molly? 13:12:07 MOLLY MORRIS: 13:12:12 Val, I think you have one more slide to cover. You want me to jump in? VAL BRADLEY: 13:12:22 Very quickly. Sorry. Because self-direction is not a 13:12:25 national program with national standards and expectations, states vary significantly and 13:12:29 how to implement self-direction. Some states 13:12:31 use their own state case managers to be support 13:12:35 (indiscernible), other states contract, some states allow people to have their own 13:12:40 personal facilitator or personal agent 13:12:41 as part of their budget. 13:12:44 The supports that people are likely to purchase 13:12:47 very widely from state 13:12:49 to state, 13:12:50 including staffing and goods and services 13:12:53 . 13:12:56 Populations in each state may vary the magnitude of those populations 13:13:00 . 13:13:00 And finally, there are a multitude of funding authorities 13:13:04 that states 13:13:05 (indiscernible) 13:13:07 support self-direction 13:13:09 including (unknown name) 13:13:15 Older Americans Act, state general fund and even a veterans administration 13:13:19 program for self-directed Veteran Directed Care. Now I will posit 13:13:23 pass it on to our good friend, Molly. 13:13:26 MOLLY MORRIS: 13:13:28 Thanks so much, Val, happy to be here. I am with 13:13:32 an organization called Applied Self-Direction. 13:13:34 Some background about us 13:13:40 is that we are a mission driven organization and our focus is on advancing 13:13:45 some direction, understanding all things self direction. We try to serve as a 13:13:50 national hub that really provides technical assistance, training, community, building to 13:13:54 be that resource around this model. We serve many different stakeholders 13:13:58 from state agencies 13:14:00 to financial management services, service providers, managed care organizations to 13:14:04 participants advocacy groups, support brokers. 13:14:07 Basically all of you and the different categories you indicated on the 13:14:12 survey, we are here to be a resource. 13:14:15 I am going to be 13:14:20 giving some background and context that I think is going to be giving you 13:14:25 a bit of the lay of the land 13:14:29 when we get more into what Lindsay is going to talk about with the findings on 13:14:35 self-direction from the National Core Indicators study. I will give you a sense of 13:14:40 the broad landscape nationally of the growth of self-direction, pulling from our recent, 13:14:44 Self-Direction National Inventory from 2023. The project was really all about measuring 13:14:49 the breadth and scope of self-direction offerings across the country. 13:14:53 This is a study we have conducted every three years since 2011. 13:14:57 We have that historical data that continues to give us a better picture of trends 13:15:02 year-over-year. 13:15:03 The data that we collected in 2023 is notable for a couple of reasons 13:15:08 . One, 13:15:09 it was the first time we did an inventory post pandemic 13:15:17 and so, we wanted to know what was the impact of the pandemic specifically on 13:15:23 self-direction? I will talk about that in a bit. We 13:15:26 coincided with a huge wave of new interest in self-direction, both at the participant 13:15:31 and program level. And while we have seen consistent, steady 13:15:35 growth every three years that we have measured, we sought a sharper rate of 13:15:40 enrollment in 2023. More states implementing new programs and 13:15:43 program expansions that at any point in the previous decade. 13:15:50 It's exciting and I will talk more about that in a moment. 13:15:57 A bit more context about our methods. Sorry, it looks like the text is a bit small 13:16:03 on the slide. I do not know how that happened but the 13:16:07 program data I will refer to today was collected from October I do not know how 13:16:13 that happened but the program data I will refer to today was collected from October 13:16:17 2022 through February 2023 so I generally refer to it as 2023 data. We collected the 13:16:22 data through initially very in-depth review of publicly available documentation about 13:16:26 publicly funded self-direction programs. Then we conducted interviews, we were able 13:16:29 to have 65 interviews with state staff from 43 states, 13:16:32 and we did have at least some form of correspondence, including email with 13:16:36 administrators in every state. In a few cases, and Roman Tama 13:16:39 -- data is not available for self-direction from administrators. 13:16:44 We were able to contact financial services providers to provide that data 13:16:47 or we used enrollment estimates that are often included 13:16:50 in Medicaid documentation. 13:16:54 Finally, as a quality check, we work with a community of 13:16:57 state administrators and financial 13:16:58 management services providers that 13:17:02 applied self-direction, we shared our initial data with that group 13:17:08 as a quality check to make sure that the numbers we collected kind of looked right to 13:17:13 people in the industry who no particular programs. 13:17:18 I talked about the spike in enrollment 13:17:21 . 13:17:25 From 2019 to 2023, we actually saw 23% increase enrollment 13:17:28 . By comparison, from 13:17:30 2016 to 2019 13:17:31 it was a 17% increase 13:17:33 . 13:17:34 That is a bigger spike 13:17:35 that we were excited to see 13:17:38 . 13:17:41 As Val mentioned, we had found 1.5 million people self directing 13:17:45 nationwide. 13:17:45 For perspective on this, I have a chart 13:17:50 on the slide and you can see that in 2011, there was about 13:17:55 700,000 13:17:55 + people self directing. 13:17:57 Year over year 2013 that was 13:18:00 up to 800,000+ 13:18:01 . 13:18:06 2019 we got to 1.2 million and then up to 1.5 13:18:10 . 13:18:10 You can see this is a program that just continues to grow 13:18:15 . 13:18:17 Of course 13:18:19 , I was just talking about national numbers 13:18:22 , 13:18:24 but self-direction enrollment increases do vary state to state 13:18:27 . 13:18:30 When we collected this data in 2023, most states reported an increase in self-direction 13:18:36 enrollment. That was 44 states. 13:18:37 But if you did report a decrease. 13:18:41 As Val mentioned, California was an early adopter of self-direction 13:18:45 and it is a large state. 13:18:50 In our national accounting of enrollment, it has always tended to be well over 50% of 13:18:56 people self directing live in California. That percentage has continued to decrease. 13:19:04 In 2023, for the first time less than 50% of people self directing live in California. 13:19:11 That shows that nationally we are showing greater growth but not saying California is 13:19:16 getting smaller. We also had six states that more than 13:19:20 doubled self enrollment. Alabama, Connecticut, DC, Florida, Maryland, 13:19:23 South Dakota had huge leaps. 13:19:27 I will spend a few minutes talking about some major trends that we have seen 13:19:32 from this data and from our interviews with states. 13:19:37 One is that there are a variety of different funding sources for 13:19:42 self-direction, publicly available funding sources. By far the Medicaid 1915(c) 13:19:47 waiver is the most frequently used source but other authority uses are growing. 13:19:51 I will talk about that in a bit. 13:19:56 We talk a lot about Medicaid self-direction but the veterans health administration 13:20:00 also has their own 13:20:01 self-direction program called Veteran Directed Care. 13:20:05 Really exciting. From 2019 to 2023 13:20:07 we saw 157% 13:20:10 increase in enrollment 13:20:11 , 13:20:14 which is the difference between an average of 33 veterans per site 13:20:19 288 veterans per site. Huge, huge growth. 13:20:22 On the next slide we will talk briefly about why that is 13:20:27 . For one, the veterans health administration 13:20:29 is really committed 13:20:32 to making Veteran Directed Care available to every Veterans Affairs Medical Center by 13:20:37 2026. Just this month the Elizabeth Cole HCBS act 13:20:41 was signed into law which also has some really ambitious goals for Veteran Directed 13:20:46 Care. Exciting to see that growth. 13:20:50 Availability of self-direction varies by population. 13:20:52 Most all states provide at least one 13:20:55 Medicaid funded self-direction offering 13:20:57 for adults over age 65 13:20:58 , 13:20:59 for adults with physical abilities 13:21:05 disabilities and adults with intellectual and develop mental disabilities 13:21:08 . 13:21:13 It is less available as an option for other populations, for instance, people with 13:21:18 serious mental illness, children who are medically fragile. It is not like these 13:21:22 programs are available in every state all of the time but we are hearing from states they 13:21:28 are signaling more interest in expanding these options. That is a trend to watch. 13:21:33 As I mentioned, the COVID pandemic really did make a significant impact. 13:21:38 People were looking to receive care at home and have more control over their care. Also 13:21:45 as I think many of you know, the majority of states created temporary emergency 13:21:50 options via their appendix K allowing for legally responsive individuals to provide 13:21:55 care which is an important feature of self-direction. 13:21:58 States also talked about self-direction as filling a critical void when a lot of other 13:22:03 services were shutting down and there was significant federal funding during this time 13:22:08 period that helped galvanize the model. 13:22:10 It is important to note 13:22:12 that in self-direction there is both the option 13:22:15 of having employer authority, were you choose your own workers 13:22:19 , and, or, budget authority, 13:22:22 where you have decision-making power over your budget 13:22:25 , can set the rate of wages for your workers 13:22:29 and can even 13:22:32 in some cases purchase goods and services that support your independence 13:22:36 . In 2023 we found states that demonstrated 13:22:39 the most growth in Medicaid funded enrollment 13:22:41 also tended to offer budget authority. 13:22:44 It starts to tell us a story that perhaps the more flexibility we give 13:22:49 , the more people are opting into self-directed. 13:22:52 More than ever, 13:22:54 we are seeing states have more sophisticated funding structures 13:22:57 , 13:22:58 specifically pairing their 1915 C waivers 13:23:02 with other funding authorities including state plans 13:23:04 , 13:23:05 which in some ways it really signals 13:23:07 embedding self-direction more permanently 13:23:09 in the structure of the state 13:23:11 . 13:23:12 In some cases making it 13:23:14 something that everyone is eligible for 13:23:17 that meets the criteria. 13:23:22 We also looked closely at the workforce 13:23:25 . 13:23:30 Obviously there is a self-direction, and overall workforce crisis impacting the home 13:23:34 and community-based services sector. 13:23:35 Several states reported that self-direction mitigated 13:23:42 workforce shortages, particularly being able to hire paid family makes a difference 13:23:46 but at the same time 13:23:49 we also heard from states that self-direction is in no way exempt from 13:23:54 these concerning patterns in the direct care workforce crisis. We need to keep an eye on 13:23:59 this. Lots of areas for future workforce to 13:24:02 understand including what could be the positive impact of increased wages and 13:24:07 benefits? What is the impact of paid family caregiving 13:24:10 unavailability of workforce? And what is the impact of budget authority? 13:24:14 We see that plays an important role as well. There is a lot of potential in the future to 13:24:21 do deeper research, particularly working with financial management 13:24:23 service providers, using the data they already collect often times through their 13:24:28 state contracts. 13:24:33 Future research that we are looking towards coming out of this most recent inventory as 13:24:39 we are preparing for the next one is again, continuing conversations about workforce. 13:24:44 How self-direction can scale to support historically marginalized and underserved 13:24:47 communities. is going to be really critical. Not everyone 13:24:50 has equal access to self-direction. Understanding the difference in unmet needs 13:24:54 and people who self directing people using traditional services. 13:24:58 And also understanding some of those states that had a decrease enrollment. What is that 13:25:03 due to? Obligated enrollment processes? 13:25:05 EVV 13:25:07 implementation not going well? 13:25:15 With that said I think it covers trends normal pass things over to Lindsay. Thanks, 13:25:20 everybody for stopping the Mac thanks, Molly. 13:25:31 This slide shows a timeline of the surveys that comprise the National Core Indicators 13:25:36 for NCI. NCI tools collect data 13:25:40 on performance and quality of life directly from people who use disability and, or aging 13:25:45 service systems, their families and those who deliver services. Since the first NCI 13:25:50 intellectual and develop mental disability survey, or NCI-IDD in 1997, 13:25:53 we have had 48 states participate. 13:25:56 Since launching the NCI aging 13:26:00 (unknown name) or NCI-AD in 2013, we have had 26 states participate 13:26:05 . We also hear from 30 states... 13:26:09 Five on the NCI state of the workforce 13:26:11 . 13:26:13 On the next slide we have the goals of our NCI tools 13:26:17 . Really, there are three angles. 13:26:21 To establish a nationally recognized set of performance and outcome into quarters 13:26:28 indicators for aging and disability service systems. 13:26:34 To use valid and reliable data collection methods and statistical techniques to 13:26:38 capture information directly for people who use services. And report those individual 13:26:43 state results 13:26:44 (audio issues) national benchmarks of the surveys 13:26:46 . If you have questions you can check out 13:26:50 our website. The link should be in the chat 13:26:53 . 13:26:55 I wanted to touch briefly on the overall methods for collecting NCI data 13:27:00 . States work closely with (unknown name) 13:27:04 to design samples to be representative of their surface population 13:27:07 . 13:27:09 On the AD survey, this is anyone who receives one active service 13:27:13 at least twice a week from their state 13:27:16 aging and disability service system, that is the eligible population 13:27:19 . On the idea decide you need to be receiving 13:27:23 at least one service in addition to case management. 13:27:26 All of the surveyors that collect the data 13:27:34 .. 13:27:35 . 13:27:38 Confidentiality is important. 13:27:44 Since COVID many states have offered both in person, or remote interviews to complete 13:27:49 the surveys. We have the surveys in multiple languages 13:27:52 and we allow for these proxies for selected questions. 13:27:56 On the next slide we have a map showing the 18 states who dissipated 13:28:01 in the 2022/2023 NCI AD 13:28:03 . 13:28:06 Altogether we heard from more than 15,000 individuals of which about one third were 13:28:11 male, average age was 67. 13:28:14 We see a fairly diverse sample in terms of race, ethnicity and diagnosis 13:28:18 . 13:28:20 On the next slide we have a map showing the 33 states that participated in the 2022 13:28:27 - 2023 NCI- IDD. 13:28:37 Altogether we heard from more than 25,000 individuals of which more than half are 13:28:42 male, average age was younger, around 40 years old and again really diverse sample 13:28:47 when we look at demographics like race and ethnicity and diagnosis. Before jumping to 13:28:52 the data, on the next slide I just wanted to share a small caveat around using NCI data 13:28:59 for advocacy. A good analogy is to think about NCI data is 13:29:03 an exit ramp. The data can reveal patterns and trends and 13:29:07 may point to a few areas where you want to look deeper at how your system is working. 13:29:13 NCI data does not necessarily tell you all of the root causes or the right solutions. 13:29:19 It is not going to give you directions from start to finish but it will tell you some 13:29:25 possible exit ramps to take on your journey to quality improvement. Let us take a closer 13:29:31 look first at who uses self-directed supports. You will see here to doughnut 13:29:36 charts. They represent the percent of respondents 13:29:38 with the NCI-AD survey on the left of the screen and the NCI-IDD survey on the right. 13:29:44 This is the percent were using self-directed supports. It is important to note that 13:29:49 because not every waiver population might be sampled to the same extent, 13:29:53 at a state in a given year, this is not necessarily a perfect proxy for the extent 13:30:00 of self-direction in a state. But at the national level it does give us a 13:30:05 glimpse of who uses self-direction within state-funded LTS as populationsS 13:30:09 populations. 13:30:16 The use of self-directed supports is about two times higher in the NCI-AD population at 13:30:22 around 34% than the NCI-IDD, which is 17% nationally. 13:30:25 On the next slide we have a packed circles graph. 13:30:28 This is intended to show the use of self-directed supports broken down by age 13:30:34 group. Within the NCI-AD and NCI IDD surveys 13:30:36 , 13:30:38 you see the use of self-direction is lower among older respondents 13:30:42 . 13:30:43 We also see that for each age group, the use of self-direction is higher 13:30:48 among NCI-AD respondents. 13:30:54 We have sent demographics of people who use self-directed supports by race and ethnicity 13:30:59 . 13:30:59 There are a lot of numbers on this table so I will just point out a few of the 13:31:06 similarities and the differences for our two surveys that were for Deaf we are focused on 13:31:12 today. For both groups 13:31:13 ... 13:31:15 Lower for Black respondents. 13:31:22 We see differences between the surveys however in terms of the use of 13:31:27 self-direction among white respondents and Hispanic respondents. This is a good example 13:31:31 of why we think we need to think about NCI data as an exit ramp 13:31:37 because these numbers show interesting patterns but ultimately we need further 13:31:41 research to really understand the factors that contribute to different rates of 13:31:45 self-direction for different groups. The last slide 13:31:48 that I have on demographics shows us the difference in the use of self-directed 13:31:52 supports for those whose preferred means of communication is spoken, 13:31:56 and those who use sign language, gestures or communication devices to communicate. 13:32:03 I thought this was really interesting to see that in both the NCI-AD and the NCI-IDD 13:32:11 there are significantly higher rates of self-direction among those who prefer 13:32:15 non-spoken forms of communication. We will come back to this in a bit when we 13:32:21 look at some of the experiences. On the next slide we will turn to 13:32:26 some slides that showcase outcomes related to the experience of self-direction. 13:32:32 Here are two tree maps of the responses to the question who makes the decisions 13:32:38 about the services that are self-directed? 13:32:41 Ultimately we see that not all people who use self-directed supports are making 13:32:45 decisions about their services, 13:32:47 and from these two tree maps side-by-side, we see that that is much more common among 13:32:53 NCI-IDD respondents. On the NCI-AD 13:32:57 survey we see 60% of people said they mostly make the decisions about the services 13:33:03 that are self-directed. That is the teal box at the top. 13:33:07 On the NCI-IDD just 14% 13:33:09 40% say they mostly make the decisions, another 13:33:15 40% say they have family friends help make the decision and 46% say 13:33:27 that 13:33:28 someone else decides 13:33:29 . . 13:33:30 .. 13:33:34 Differences in how people are expensing self-direction in our survey populations 13:33:38 . 13:33:41 On the next slide we have a table showing the national data on measures of the 13:33:47 experience of self-direction. 13:33:48 The good news is that we see relatively high rates in both surveys of people saying 13:33:53 they have enough help deciding how to direct their services, that they can make changes 13:33:59 to their services and that they have the amount of control they want over the 13:34:04 services that are self-directed. However, we also see that three quarters of 13:34:08 NCI-AD respondent say the services and supports 13:34:11 they want to self direct are always available in about two thirds of NCI-IDD 13:34:16 respondent say this. 13:34:19 We also see about one third of our NCI-AD respondent say they need help with at least 13:34:25 one part of self-direction like getting their staff paid, funding staff, managing 13:34:30 benefits and this is higher on NCI-IDD with about one into respondents. 13:34:34 In this slide we will look at some of these outcomes related to the experience of 13:34:40 self-direction and how those are tied to demographics. 13:34:43 We've noticed some rather stark differences on both the NCI-IDD and NCI 13:34:47 AD surveys with people who prefer non-spoken forms of communication. 13:34:51 We see a pattern that they are a lot less likely to have make or 13:34:56 have input on self-direction decisions. 13:34:59 Of all people use on the garage, gestures or communication devices, may use family, 13:35:04 friends and staff to help interpret their communication, they should absolutely have 13:35:09 the same opportunities as their peers to make decisions about services. It may be 13:35:14 there -- additional supports needed to facilitate decision-making such as enhanced 13:35:18 training for staff 13:35:19 or updated requirements for individuals who helped to develop 13:35:22 person centered centered plan -- patient plants. 13:35:28 This slide shows who makes the decisions 13:35:30 ... 13:35:32 Just wanted to spotlight one of the surveys 13:35:35 . 13:35:41 This is a stacked bar graph that shows the percent who say they mostly make the 13:35:46 decisions, that they have input, or that someone else makes decisions. One of the 13:35:51 bars shows that breakdown for those who prefer spoken communication. That is the one 13:35:56 at the top. The bottom shows the break down for those 13:36:00 who prefer non-spoken forms of communication. The dark green here shows the 13:36:05 percent that say they mostly make the decisions. 60% for those who use spoken 13:36:10 communication while just 12% of those who prefer non-spoken communication say that 13:36:14 they mostly make the decisions. At the other end of the bar, the yellow, 13:36:19 you see the present who say someone else makes the decisions for them is just 13% for 13:36:25 those who prefer spoken communication, while 56% for those who prefer non-spoken forms. 13:36:30 It is almost an exact flip. I will just finish with a quick look at the 13:36:36 experience of self-direction by age group on the next slide. I was so 13:36:43 somewhat surprised by these results, really that they looked so similar across NCI-AD 13:36:47 and NCI-IDD. The green column are those using 13:36:50 self-directed supports who are 18 through 44. 13:36:53 The teal is 45 through 64. 13:36:55 The gray is 65+ group. 13:37:01 You see both for NCI-AD and NCI-IDD, the younger group have lower rates 13:37:06 of saying the services and supports they want to self direct are always available. 13:37:12 They have higher rates of saying that they need help on at least one part of 13:37:18 self-direction compared to their older peers. We know that there 13:37:25 are long-standing workforce shortages that contribute to these numbers but additional 13:37:29 research is needed to understand the factors that contribute to the younger adults having 13:37:34 a different experience of self-direction so we can better plan for the future. 13:37:38 I wanted to plug that we are in the process of developing some of these analyses into a 13:37:45 full issue brief with more information. So, stay tuned for that. Thank you. 13:37:50 ALICIA BOEHME: Thank you, hello everyone my name is Alicia Boehme. 13:37:54 Christian Moran and I are here to talk about the long-term care self-direction 13:37:58 programs in Wisconsin. 13:38:00 We both work in the division of Medicaid Services and oversee different aspects of 13:38:05 the adult Medicaid long-term care and also acute and primary care programs, including 13:38:09 the programs we are going to be talking about today. 13:38:13 Today we will cover 13:38:19 a few topics including the Wisconsin long-term care waiver program, landscape in 13:38:23 Wisconsin. The Iver self direction program overview. 13:38:27 How Medicaid collaborates with participants, families, advocates, providers 13:38:30 and partners. 13:38:31 And opportunities to improve growth and access to quality 13:38:34 . We will also talk about what we wish we knew 13:38:39 when we started the program. 13:38:41 In Wisconsin 13:38:44 we have a number of adult long-term care waiver programs 13:38:48 . 13:38:48 All of them cover adults with disabilities and older adults. 13:38:55 We know that every state looks different but we are here to let you know more about 13:39:00 the models in Wisconsin. Family care, there are about 53,000 13:39:04 individuals in this program. This is our adult long-term care managed 13:39:08 program. 13:39:10 The second program which is really what we will be focusing on a lot today is our IRIS 13:39:17 program. It stands for include, respect, I self 13:39:20 direct. 13:39:23 This is our self-direction program in Wisconsin, we have almost 20,000, 27,000 13:39:28 individuals in this program. The third program we have 13:39:31 programmed in Wisconsin is the partnership program. 13:39:33 It has about 3000 individuals. 13:39:41 This is a much smaller program, not statewide and covers acute and primary and 13:39:46 long-term support services in Wisconsin. On the right-hand side you can see the NCI-AD 13:39:53 data and you can see that in family care we do have a self-direction option. 13:39:59 32% of those in family care choose this option. 13:40:02 It allows individuals to self direct 13:40:04 some things in their managed care program 13:40:07 including you can choose some services, staff 13:40:10 , 13:40:10 create their own schedule and set standards 13:40:13 for individuals who are working for them. 13:40:16 This is a small subset and people can choose 13:40:20 if they want 13:40:21 to self direct certain aspects 13:40:23 . Secondly, 13:40:26 is the self-direction program which is IRIS 13:40:28 . 13:40:30 This is 99% but hundred percent of these 13:40:34 the individuals 13:40:36 in this program to self direct 13:40:38 . 13:40:49 The history of 13:40:50 the IRIS program 13:40:51 . 13:40:55 It is a fully self-directed program which means the participants 13:40:58 have the freedom to decide how they want to live their lives. 13:41:03 It was created in 2008 13:41:05 for individuals over the age of 18 years old 13:41:08 . Currently, the budget for this program 13:41:11 is about $1 billion 13:41:12 . 13:41:13 This is a very large program 13:41:15 . 13:41:16 IRIS participants 13:41:20 are supported by IRIS consultant agencies, we call them ICA 13:41:24 s, and fiscal employment agents or 13:41:26 FDAs 13:41:27 . 13:41:30 Workers and participants are paid through the FDA 13:41:33 . 13:41:44 The buyers benefit package includes vocational, transportation, supportive 13:41:47 homecare, personal care 13:41:48 , medical equipment and supplies, counseling and therapeutic services. 13:41:51 IRIS participants must have a nursing 13:41:55 home level of care in order to qualify for the program 13:41:59 , 13:41:59 and they receive a budget for long-term care services and supports 13:42:03 . They manage their monthly budget, 13:42:06 caregiver hiring and their individualized program 13:42:08 . 13:42:10 plan 13:42:11 . 13:42:16 This shows the growth of the program which has been astronomical. You can see that in 13:42:22 2008 we started off the program and it has consistently increased year-by-year 13:42:26 by significant amounts. Now we are 13:42:29 around 27,000 participants in the program 13:42:31 . 13:42:36 This map here on the right hand side 13:42:39 shows 13:42:40 both the F 13:42:41 ea 13:42:41 ea 13:42:43 E 13:42:43 A 13:42:48 and ICA footprints within Wisconsin. Individual 13:42:50 have a choice for 13:42:52 FEA 13:42:52 s 13:42:57 and about five ICA's located in different parts of the states and regions 13:43:02 . The individual's choice depends on the 13:43:05 region that they are in. IRIS 13:43:15 physical employer agencies help participants choose and manage the work is 13:43:19 that Harpo stop and the IRIS consultant agencies help participants manage their own 13:43:23 care and handle the day-to-day program operations. We also have 13:43:27 an IRIS self-directed personal care agency that we contract with that allows 13:43:31 participants to hire, train and oversee their personal care workers. 13:43:40 We have what we call the IRIS advisory committee and they are responsible for 13:43:45 providing feedback on the program. This is very important to the program. 13:43:49 They provide feedback to us on proposed changes to program policies, to the 13:43:54 contracts we have with the various ICASa and FEA 13:43:57 s 13:43:57 and also provide input 13:44:00 -- input on federal waivers. 13:44:07 They also provide feedback on reports such as NCI 13:44:11 and state led participant satisfaction surveys 13:44:13 and implementation of program operations and infrastructure 13:44:16 . 13:44:19 The committee members include participants, family members, providers, advocacy groups 13:44:25 and whispered that across all three target groups 13:44:28 served by the program. 13:44:32 So again, individuals with intellectual develop until disabilities, those with 13:44:36 physical disabilities and older adults. To highlight within the context of these 13:44:40 meetings, we have a public 13:44:44 comment period so anyone is welcome to come on and provide feedback to the committee 13:44:49 and to the Department of health services on the program. 13:44:54 I will pass it along to Christian Moran who will talk more about the IRIS waiver. 13:45:00 CHRISTIAN MORAN: 13:45:05 Thank you, Alicia. My name is Christian Moran, I am with the 13:45:10 Wisconsin division of Medicaid Services. Just want to take a few minutes to talk 13:45:15 about the process we are in and renewing a waiver for the self-direction that smacks of 13:45:20 directed program. We operate IRIS under in 1915(C) 13:45:23 waiver and we are very excited with the opportunity to make updates to the waiver 13:45:29 as this opportunity only comes around every five years. 13:45:35 Our current waiver runs to the end of this year, December 31 and the new waiver will be 13:45:41 effective, sorry, January 1 of next year. 13:45:44 We want to take this opportunity to improve the policies and services to make our 13:45:49 program better and keep it sustainable for the 27,000 people who are served by the 13:45:55 program. In the next slide I want to talk briefly 13:45:58 about our outreach efforts we have done in the last year. We began working on our 13:46:04 waiver in earnest last spring. As part of the process we did an extensive 13:46:09 outreach campaign. At the onset we wanted as much as input from 13:46:13 program participants, families and our partners, essentially all of the people 13:46:17 served by support or have an interest in our program. We conducted an online survey. We 13:46:23 got input our IRIS advisory committee that Alicia mentioned as well as our tribal 13:46:28 health directors. We held two virtual public input sessions, 13:46:31 one in the day and one in the evening. Through all of the outreach efforts we 13:46:37 received over 2100 comments. 13:46:41 In the next slide I want to go over the themes we heard as a result of these 13:46:47 this outreach. There were six major themes. 13:46:49 The largest proportion of the comments we received were about services 13:46:54 , about 40%. There was an equal share about 13:46:59 -- with comments about transportation, cultural competency and integrity at about 13:47:03 15% each. 13:47:04 Likewise about housing and self-direction at roughly 8%. 13:47:09 While transportation and housing 13:47:10 are 13:47:14 services, we decided to break this out separately given how many comments we had 13:47:19 received about the services. 13:47:21 I will note that many of the comments we 13:47:25 seed were about complex issues that could not be addressed solely through the waiver 13:47:30 itself. We have collected all of that input and are 13:47:34 looking at other ways to address those issues outside of the scope of the waiver, 13:47:40 either through policy changes, changes in our contracts with their vendors 13:47:44 or other means. 13:47:45 In the slide 13:47:52 the next few slides I will go over some of the themes we receive. Again, we received 13:47:58 many comments about services. Just to give you an example of some of the 13:48:03 contents we received, comments about employment 13:48:05 and vocational services, need for that employment, training, job training 13:48:11 support with those with disabilities looking to enter or stay in the workforce. 13:48:19 I do not have time to read all of the comments in the slides but we did want to 13:48:25 highlight some of the direct feedback we received. On each of the slides you will see 13:48:31 in blue are direct comments that we received. I want to highlight a theme of 13:48:37 transportation. We received a significant amount of comments 13:48:39 around alternative transportation solutions. Using for example, Huber and Whiffed lIFT 13:48:44 Lift as a transportation option. 13:48:45 We had our camera care 13:48:49 family care 13:48:53 On the next slide I want to briefly 13:48:56 draw upon some NCI data. 13:48:59 As a point of comparison we have survey results 13:49:02 for Wisconsin's 22 1 13:49:04 20 13:49:04 22 13:49:05 -2 13:49:05 0 13:49:06 23 13:49:10 NCI-AD and NCI 13:49:13 IDD for transportation 13:49:14 . 13:49:21 86% 13:49:23 of IRIS participants 13:49:26 compared to 80% for family care 13:49:28 . 13:49:28 By comparison 13:49:30 the table on the right 13:49:36 shows slightly absent for IDD population, 76% 13:49:41 for IDD population who do not sell direct say they have access to transportation 13:49:46 compared to 71% to self direct. 13:49:49 As Lindsay mentioned earlier, we consider these results and exit ramp 13:49:53 . The results are helpful as we are looking to 13:49:56 understand differences in how participants are experiencing our programs 13:50:00 as we look to explore solutions to close these gaps. 13:50:04 In the interest of time, 13:50:07 if we could just briefly go through each of these quickly. 13:50:11 You will receive the slides. 13:50:13 The next was touching on cultural competency. 13:50:16 The following slide touched upon integrity 13:50:18 . 13:50:21 In the following slide touched upon housing 13:50:23 . 13:50:24 If you have an opportunity 13:50:29 to look the slides you will see some of the comments we received from people who 13:50:35 responded to our outreach efforts. With that I will turn it to Alicia for our 13:50:41 closing slide. ALICIA BOEHME: 13:50:42 Thank you, Christian. 13:50:45 In hindsight, as you saw in the previous slide that I shared 13:50:50 , the program has grown very quickly and so that 13:50:54 has proposed some challenges for us over the years 13:50:57 when we created the program we created it for a very small number of people 13:51:02 . In hindsight we would have built policies 13:51:05 and program infrastructure differently had we known 13:51:08 it was going to be about $1 billion program 13:51:11 with 27,000 individuals as a part of it. 13:51:17 In response to that we have increased our internal resources in the IRIS program 13:51:22 over the past couple 13:51:26 number of years will stop we now have a larger cross Bureau structure that helps us 13:51:31 manage the policy, fiscal and oversight needed for this large program. 13:51:35 I will pass this along to the next person. 13:51:43 LAURA VEGAS: 13:51:46 Good afternoon, I am Laura Vegas 13:51:48 with the (unknown name) team. 13:51:50 What does it mean for us 13:51:52 and what are some of the takeaways from today 13:51:56 in some future directions? 13:51:59 One of the things we learn today is the use of self directed supports continues to expand 13:52:05 across all populations that we support in the country. 13:52:08 And it is important to ensure that all populations have the same opportunity 13:52:13 to find information about and 13:52:15 access self-direction. 13:52:20 As self-direction expands we need to measure and monitor the quality of 13:52:25 self-direction. And continued research will be needed to 13:52:27 explore more deeply 13:52:29 the associations between the use of self-direction 13:52:31 and community living outcomes 13:52:33 . 13:52:34 People have been really busy 13:52:36 answering the questions in the chat 13:52:38 . 13:52:39 So, thank you everybody 13:52:42 . 13:52:44 I think that is all we have 13:52:47 . Thanks everyone for coming 13:52:48 . 13:52:57 I'm just reading the question. A bit about HSRI. They are all about 13:53:01 improving systems and changing lives. They are a nonprofit organization founded in 13:53:06 1976, 13:53:08 looking to craft community-based, person driven solutions across service systems 13:53:11 and they gather research using a collaborative, inclusive 13:53:14 and participatory model. 13:53:15 They are a great partner, by the way 13:53:18 . 13:53:18 So, thanks to everyone 13:53:20 . 13:53:22 Are the questions in the chat that we can answer? 13:53:26 before... 13:53:29 Or are people taking care of all those? LINDSAY DUBOIS: Yes 13:53:32 . I saw a question about 13:53:35 kind of self-direction 13:53:36 for people with IDD 13:53:37 , 13:53:43 data on states that are supporting people to self-correct even when they have high 13:53:48 support needs like 24/7 support. With the NCI data we can look at that. 13:53:53 We do have questions on the extent of supports 13:53:56 required and we can look at self-direction for folks 13:53:59 . 13:54:00 And then in terms of comparisons to spending 13:54:03 ... 13:54:03 Laura or Molly 13:54:08 (indiscernible) if there is any data you are familiar with 13:54:11 that could make that connection to state budgets 13:54:14 related to self-direction? 13:54:18 MOLLY MORRIS: This is Molly. 13:54:20 I do not have access to that budget information 13:54:23 but I would love to have access to it (Laughs) 13:54:27 I want to know that story as well. 13:54:30 I also just wanted to jump in on the other question 13:54:34 where the person was asking about what is 13:54:37 Deaf what is up direction look 13:54:39 like for people with 13:54:41 IDD when their parents H out from being in a caregiver role? 13:54:46 I want to acknowledge what an important 13:55:02 .. 13:55:03 . 13:55:05 Interesting solutions to that problem 13:55:07 but it will also require innovation. 13:55:14 LAURA VEGAS: 13:55:18 Any other questions that are not being answered in the chat? 13:55:22 Molly, there is one more question for you. 13:55:25 It says we hope you can help us learn about aging in place, 13:55:29 about 24/7 supports 13:55:31 and Applied Self-Direction 13:55:32 can truly be helpful 13:55:34 . 13:55:34 MOLLY MORRIS: 13:55:36 Thank you, Maggie 13:55:37 . 13:55:39 I know who you are and I appreciate that comment and I will just say 13:55:45 , as a sibling of someone with IDD, 13:55:48 this particular issues close to my heart. 13:55:50 LAURA VEGAS: Someone asked if the 13:55:58 (indiscernible) is the independent facility or like a sport broker? Also where is it 13:56:03 required in statute to the previous question? Anyone want to take that one? 13:56:08 Is an independent facility or like a support broker? 13:56:12 VAL BRADLEY: 13:56:19 What the function of independent -- the function of an independent facilitator is 13:56:23 our CMS's 13:56:26 definition of self direction. If the state is doing self direction they 13:56:30 have to provide independent facilitation. States vary in terms of how they 13:56:35 operationalize independent facilitation. 13:56:38 That could be through contract and support brokers, it could be through the state or a 13:56:44 case manager. It could also in some states be through a 13:56:48 contracted staff person or personal agent who can serve that function. Our friends from 13:56:53 Wisconsin and Molly may have other answers to that question. 13:56:58 MOLLY MORRIS: 13:57:02 I was a bit distracted looking at all of these inputs (Laughs) 13:57:06 people asking question. 13:57:10 I will just reiterate, forgive me if I am repeating anything Val said, nationally, 13:57:18 every state structures their programs differently. Information and assistance is a 13:57:22 broad category of support that is different from a case manager that is their job, 13:57:27 coaching you to be an employer. That looks and is called and is structured 13:57:32 in different ways state to state. 13:57:34 LAURA VEGAS: Thank you, Molly. There were some comments and questions about 13:57:39 oversight. The FSA 13:57:45 and states, I am wondering if Wisconsin, since we have a few minutes, would mind 13:57:51 speaking to how they provide oversight of their self-directed work and ensure the 13:57:55 services are quality? ALICIA BOEHME: This is Alicia again. Yes, we 13:57:59 have a whole team that ensures that our contracted entities, the FEA 13:58:04 s ,, the ICAs 13:58:08 and (unknown name) are meeting the expectations of the contract 13:58:11 . 13:58:13 If they are not we work with them and we also have a team to help solve problems 13:58:20 where participants might be having disagreements with 13:58:22 the program or concerns about the program. 13:58:25 We also step in to make sure that those are resolved 13:58:29 , and work with our contracted entities to do that. 13:58:33 If the contracted entity is not meeting the expectations of the contract 13:58:38 or there are major concerns, then we can hold them accountable 13:58:42 through corrective action plan and that is one tool that we use 13:58:50 . 13:58:50 There is sanctions if we 13:58:56 choose to implement them. But we like to have a collaborative working 13:59:00 relationship with all of our contractors and work with them to make sure that 13:59:05 improvements are made. LAURA VEGAS: Thank you. Thanks to everyone 13:59:08 and to our state panel. I always learn a lot 13:59:12 on these panels. 13:59:14 You will see on your screen a post webinar 13:59:20 evaluation. Please let us know how we did. We are always 13:59:24 a need for feedback to constantly 13:59:26 improve the work that we do and resources we provide. Have a great afternoon. 13:59:31 We appreciate your purchase a patient and active conversation in the question and 13:59:36 answers. Thanks. 13:59:48 ( 13:59:48 End 13:59:48 of w 13:59:49 ebinar 13:59:50 )