>> Good afternoon and welcome, I'm Carol Eubanks with ILRU.  This webinar is being recorded and will be available on‑demand within a few days. Today you'll have an opportunity to ask questions during the webinar and we do have a number of ways to do this. First of all, in the Zoom platform, one of the menu options is Q&A.  You can click there to submit questions any time during the presentation.  We are going to wait until our Q&A break to address them, but please share your questions there.  If you accidentally type a question in the chat, that's okay, we'll find it there, and we will be sure to address it.  But try to put them in the Q&A if you can. There is captioning available. You can view the captioning by selecting the CC tab on the Zoom platform.  You can make that box larger by clicking the arrow in the top right‑hand corner.  If you still would prefer to have a larger font, I recommend you check out the full screen CART captioning.  You can find the URL in the chat on the main webinar screen.  Also, if you are on the full screen CART captioning today, there's a chat option there.  We will be logged into that chat, and you can ask your questions there as well.  We'll be sure to voice them during our Q&A break. Finally, when we finish today, you'll actually have the evaluation form open up on your screen.  So when you close the webinar that evaluation form will pop up and it's very short.  It's easy to complete.  I hope that you'll give us your thoughts there.   We use it all the time as we make decisions about how to operate and improve the CHRIL project. Now I would like to introduce our producers.  So thanks in advance for that.  And now I'd like to introduce our presenters. Jae Kennedy chairs the Department of Health Policy and Administration at Washington State University. He began studying disability Can policy at the World Institute on Disability (WID) in 1989, and completed his doctorate in Health Services and Policy Analysis at UC Berkeley in 1996. His research focuses on understanding the health and employment disparities experienced by people with chronic illness and disability, and on developing effective programs and policies to lessen those disparities. He has published over 50 peer‑reviewed journal articles, and received the Switzer Distinguished Research Fellowship from the National Institute on Disability and Rehabilitation Research in 2000. Brooke Curtis is the Program Coordinator for ILRU's IL‑NET National Training and Technical Assistance Center for Independent Living. As the Program Coordinator, Brooke is responsible for managing training and publications activities for the IL‑NET. Prior to arriving at ILRU, Brooke conducted recruiting, training, and retention efforts for an education company and worked for a non‑profit where she played a notable role in launching the non‑profit's young professionals group and Junior Board. Brooke received her B.A. in Biology from DePauw University and her Master's at the School of Biomedical Informatics at the University of Texas Health Science Center at Houston. Jenny Dick‑Mosher is currently working as a CHRIL fellow. Her research focuses on disability, gender and employment. While completing her PhD in sociology from Virginia Tech, she worked for 3 years as a disability advocate at Virginia's Protection and Advocacy agency. Lex Frieden is Professor of Health Informatics and Rehabilitation at The University of Texas Health Science Center at Houston. He also directs the Independent Living Research Utilization Program (ILRU) at TIRR Memorial Hermann. Frieden has served as chairperson of the National Council on Disability, president of Rehabilitation International, and chairperson of the American Association of People with Disabilities.  He is recognized as one of the founders of the independent living movement by people with disabilities. Lex was instrumental in conceiving and drafting the Americans with Disabilities Act (ADA) of 1990. He currently serves on the board of the Metropolitan Transit Authority of Harris County, Texas (METRO). And with that I'll turn it over to you Lex!

>>LEX: Thank you very much, and thank you all for joining us today for this important program about COVID‑19 and independent living centers.   I want to to switch you all at this point of time, and if you don't have your mask on now, be sure that you have it with you so that, when you step away, you are able to be safe. And I can say that with some degree of authority, since we are speaking from what some have termed the COVID capital of America.  We are right now in the middle of a terrible surge and people with disabilities are at great risk, like the rest of the community.   However, because many of need assistance on a daily basis, we are confronted by issues that may not confront the rest of our friends and neighbors.   That really is the subject matter of today's presentation.  And I am so pleased to be able to do this on behalf of the TRILL and ILNET, our partners here had really committed to improving the lives of people with disabilities through work, with the National Network of independent living centers.   So we are glad to have you all with us today. Next slide, please. We wanted to take a look at the impact of COVID‑19 on the centers, and we wanted to do so by getting out, via our network, to the centers for independent living to determine what kind of service demands COVID‑19 was adding to the ordinary service responsibilities that independent living centers have. We did so through our partnership with the collaborative on health reform and independent living, CRIL. Next slide, please. Let me say a few things about the CRIL.  The CRIL is an invention of Jay Kennedy, I am glad to work with Jay, we met 30 years ago.  Good things come to those who wait, during the last 5 years, we have been able to develop our relationship and our collaborative approach to serving people with disabilities. And we have focused on the independent living centers, because these ‑‑ this network is so important to Americans with disabilities and, frankly, it is a model for the world.   We want to find out what kinds of health reform measures can be taken to improve the lives of people with disabilities, and we have done so in conjunction with NICL in April, the organizations that primarily represent organizations of independent living.  Funding for the CHRIL comes from the national institute for independent living and independent living research, and we are so pleased to be able to continue the research efforts we have undertaken for the last few years. Next slide, please. The CHRIL is made up of a partnership of strong members. It is led by Jay and his team at Washington State University, in addition to that, we have ILRU, we have the George Mason university colleagues, we have the association on health and disability, and we have the university of Kansas. Each one of these partners are important to the CHRIL, in addition, we work closely with NCIL and with APRIL.  Next slide. So in order to give you some background on the research that we did, and I know that some of you on the call actually contributed to the work that we have done and you are eager to see the results. Jay Kennedy will give you the premise, and our other colleagues here, Brooke and Jenny, will pitch in with some of the data that we have, and our findings. And at the end, I will help to summarize and Jay and I and Brook and Jenny will answer any questions that you may have. Dr. Kennedy, the floor is yours. 
>>DR. KENNEDY: Thank you, Lex.   Next slide, please. So COVID‑19 is obviously a problem, but it is hitting the disability community particularly hard. And there's very little direct evidence of this, because the CDC and other government agencies aren't collecting disability‑specific information on rates of COVID infection, illness, and death. But we can certainly infer from the very high rates of illness and mortality in nursing homes that at least, primarily older adults with disabilities ‑‑ drop in audio ‑‑ to novel virus.  And most adults with disabilities don't live in nursing homes, they live in the community, and they share a lot of similar risk factors to those that reside in nursing homes and care homes.   Comorbid healthcare conditions, advanced age, frequent interactions with health professionals and service providers, and therefore, we suspect and we're able to infer from some of the data on co‑morbid conditions associated with risk, that the disability population as a whole is particularly high‑risk, of COVID illness and complications.   We also suspect that some of the excess mortality we are seeing, excess mortality is a simple term, we are comparing age adjusted death rates of the previous year to the current year.  If there's a difference, it can be due to a lot of things, one thing is COVID, we are at 130,000 people that died of COVID, but overall mortality rates are also up.  We suspect people weren't diagnosed with COVID before they died, or because are treated for other chronic conditions.   Primarily and specialty care has dropped during the pandemic, and there is socioogenic illness associated with the pandemic, what people are calling depths of despair. So over doses, suicides, other things like that that are, potentially, the disability community is vulnerable to that as well.   Next slide. And we know, of course, people with disabilities, like other minority groups, face significant inequities already in education, income, employment, housing, transportation, and community education.   Disability rates are higher than other minority groups with COVID, including racial, ethnic, gender, and sexual minorities.   And we know from lots of research, including what we have done at the CHRIL, people with disabilities use higher use of healthcare services than people without, so combination of high use and limited resources is that people are at a disadvantage if they have a disability and they are at greater risk of communicable disease, including COVID‑19. Next slide. And another issue that we're just starting to try and figure out right now, this is a completely novel disease.  So we don't know what the long term consequences are.  We know the significant numbers of survivors are experiencing long‑term complications from COVID‑19, including impaired function of the lungs, heart, brain, kidneys, and circulatory system.   So we suspect that people with preexisting chronic health conditions and disabilities will be at higher risk in the long‑term complications pool, but there's a number of people that previously didn't have a disability, but now they have had COVID, they are going to have long term disabilities.  So we don't know how big the effect is going to be, but we suspect that in the coming months and years, we are going to see an increase in demand for disability benefits, like SSI and SSDI, and various support services.   That is including those provided by the centers For Independent Living. Next slide? That is to you, Brooke.  
>> All right, thanks Jay. So I am going to be covering the study methodology.  Next slide, please. All right.  So before I discuss the methodology, we wanted to give a little bit of background about centers For Independent Living.  What are CILS? They are community based cross disability non profit organizations that are designed and operated by people with disabilities, they operate according to a strict philosophy of consumer control, where people with all types of disabilities giveern and staff the organization.   They provide the independent philosophy, where they are the best experts on their own needs.   And CILs provide a variety of services, so we listed the services here.  And they include individual and systems advocacy. So individual advocacy includes helping helping individuals address challenges or barriers that they sort of experience in their community. Systems advocacy is work that the center does to address community barriers with the local government and service barriers.   And we also have peer support. So this is peers, so people with disabilities, sharing their experiences with each other.   And this is information and referral, this is a grate way to other services that the center provides, and it often connects people with other services and supports in the community.   And we have independent skills training, this is assistance with skills that helps the individual live independently in the community.   And so a few examples would be learning how to manage community and home‑based services to remain in the home and another example could be learning how to access and navigate public transportation. And then last, we have transition services, this set of services covers transition to the community from institutions, like nursing homes.  It can also cover diversion, or avoiding placement into institutions and the transition of youth from school to the community.   So the centers were surveyed because of they're detailed insights on the current needs of people with disabilities during this public health crisis of COVID‑19. Next slide, please. All right.   So it is estimated that there are about 403 centers in the United States, the IL net‑operated ILRU keeps a regularly‑updated contact list of centers for independent living.   So on April 20th, the IL Net sent out the CHRIL and IL‑net COVID‑19 needs assessment to the centers for independent living staff.  And so after the survey concluded and the data was claimed, we ended up with about 144 responses, and so the responses came from CIL administrators and staff. And one thing that is really important to note is that because it was sent out to individuals who work in a CIL, there could be multiple responses from one center.  Next slide, please. All right!  And so our analysis strategy.  So the survey included both open‑ended questions, and multiple choice questions.   So for the multiple‑choice questions, we did use frequency tables to characterize the responses, and a lot of those multiple choice questions focused on CIL operations, staffing, current services offered, and new services. And then, for the open‑ended questions, we used basic qualitative methods to identify reoccurring themes.   And the open‑ended questions focused on organizational challenges, consumer and staff concerns, and local issues that the respondents felt should be brought to the attention of the administration for community living. Next slide, please. All right. I am going to pass it back over to you, Jay.  
>> Okay, I am going to spend the next 15 minutes or so talking about responses to the series of four open‑ended questions that we included in the survey.   And I am going to kind of describe what I see as some of the major themes in these questions, but I am going to let people speak for themselves.  I know there's a lot of folks on this webinar that actually answered our survey. And there is some really powerful comments in there, and I think, with this kind of work, it is best to just kind of get it out of the way and let people speak for themselves.   So I really appreciate and honor your perspectives and want to give a chance to talk about those broadly. Next slide, please. So our first question was: Right now, what are the biggest challenges that CIL is facing in providing services to adults with disabilities? This came out in April, we are a month into the pandemic.   This is relatively early on, we wanted to figure out what was going on in the CILs throughout the country.  First slide, or next slide, sorry. So probably the biggest concern of CIL administrators was the disruption of face‑to‑face relationships that came with sudden closure and elimination of these face to‑face services of most people with disabilities.   A lot of these centers scaled back operation or moved to phone and internet‑based communications only.   And that was a real challenge, as many of you now are the genius of the independent living movement in the CIL, it creates a physical space where people can ‑‑ they look like each other, and how a personal experience with disabilities can share coping strategies and experience solidarity with other folks with disabilities that are trying to live in that community independently.   So trying to convert that to a virtual relationship was difficult and painful.   So the first quote, because we are also considered high risk, as Brooke mentioned, most people working at the CIL have disabilities themselves.  We are also considered high risk, we cannot help our peers directly, it is hard breaking to deal with such extreme needs remotely.   The challenge is not convening face to face assessments, that allowed us to identify needs not expressed verbally.  Many of our consumers have language barriers and don't have video capabilities and they are missing that face to face connection. Next slide, please.  We will come back to this point again.   The abrupt move to phone and computer communications really brought into relief some serious technology gaps in both the user population and the centers. So some quotes on this, because we don't ‑‑ we are relying on cell phone use, or home phone use, people don't recognize who is calling and won't answer.   So I don't know about you, but I typically don't pick up my phone anymore unless I recognize who is calling.  That is a problem for organizations that are relying on phone communication now. And another person says, for the disability community and older adults that are not used to go online to access information if they own a computer, since they don't have internet, we cannot do Facetime or Zoom meetings, either.  We rely on phone calls, emails, snail mail.   Most consumers don't have a phone or computer, voicemail is full, consumers do not often answer, and it takes longer than usual once you have somebody on the meeting, because consumers need to express their concerns and anxieties and other issues they are dealing with. Next slide, please. And we've heard this a lot about CIL, let's go back to the rural slide for a second. Obviously, rural communities have less access to high‑speed internet, cell service can be spotty, so particularly for centers that serve geographically large rural communities, getting services to those consumers is a real challenge. And several people mention the challenge of working with American indian communities, and some of the issues around socio‑economic barriers, to telephone aid and the internet communications and just making sure that community isn't being lost in the crisis. Next slide. There were some general comments about the financial repercussions of the pandemic. So many of you know, the CARE S Act did provide substantial funding for centers that received part C rehab act funding, that is not all centers, only those that received part C and that went a long way to helping people cover payroll in the centers, but other sources of revenue have dried up.   One administrator notes there is no face to face interactions and no fee for service, which is a hit of $50,000 a month.   People notice a decline in demand for services, because people are sheltering at home. And he or she is worried that may mean the consumers are going without needed assistance.   And people that rely on donations have been taking a hit.  One person said that we had to cancel cancel our largest fundraiser of the year, we doubt we can recoup those funds.   And although people are happy with the support they received from CARE S act fund, some centers expressed concern on how to use it appropriately.  Next slide? And we asked what are the biggest pandemic related concerns for consumers.  Next slide. So obviously, CIL consumers have a lot of worries about their health and access to needed healthcare services. Another big theme was access to protective personal equipment, like masks, and consumers didn't have access to those basic technologies and particularly because they are higher risk, that was a real concern. And the move to telehealth has been a challenge for people that have high levels of healthcare needs. So many health issues cannot be addressed through video or phone calls by doctors. Or generally, people needed access to things like prescriptions and primary care and basic necessities, as well as PPE. A huge concern of a lot of consumers is the concern that they are going to be hospitalized or institutionalized, and these are not good places to be in in the midst of a pandemic, especially if you have preexisting conditions. So people were concerned they would be discriminated against when they got to a hospital as well because of the high demand for services and the discrimination that people with disabilities face when they access those services.   So if hospitals need to triage, there's a legitimate concern that people with disabilities will be excluded from essential services, such as getting a ventilator.   Next slide. Personal assistance for people that used attendance is disrupted by the pandemic.   PCAs working multiple jobs and working in nursing homes and hospitals, so they have been having lots of mandated shifts and are not as flexible and available for personal assistance, PAs are not showing up because of their health needs and concerns, families are worried about bringing PAs into the home. And people are worried about their caregivers, they lack PPE and they are worried they are going to get sick, not only get the consumer sick, but get sick themselves and disrupt that relationship.   And one participant wrote that it is a challenge to maintain dependable long term providers without a pandemic, so this adds another layer of complication. Next slide. Basic food and housing concerns, particularly in the early days of the pandemic, where people were panic buying toilet paper, but food.  This was also a concern particularly for people with medical dietary requirements.   And the mechanics of ordering and getting food remotely was a challenge for people, especially if they rely on SNAP cards. And then as you kne, and in large cities, people that are homeless and disabled are public ‑‑ public facilities are shutting down. So restrooms and libraries and places where people can access water for drinking, bathing, and hand washing is shut down, which is leading to additional risks for a subset of consumers.   Next slide.   And people were worried about income and benefits, long term, obviously, people are worried about their jobs, and we will get back to it in a minute.   For people that use section 8 housing, food stamps, SSI, SS D I, there's a lot of paperwork associated with that.   One of the important things that CILs do is to provide help with all of that.  For them unable to access those services, there's a concern they will be denied continuation of services, or a recertification of services and that eligibility determination for services is also going to be delayed.  Next slide. And socio isolation is a big deal for everybody, particularly consumers, a population that is already isolated that are more isolated, and that has an impact on their mental health.   They have limited and social interaction, many people, especially young adults, need face to face interaction, they don't understand the whys of isolation, even though they have done it the rest of their lives.   They are finding problems with encountering isolation.   And we are worried about concerns of staff, many of them have disabilities, next slide. And again, health and safety concerns, for people working in the CILs.   And we are worrying about passing that on to their loved ones, or on to their consumers they are working with. The centers themselves have trouble getting appropriate PPE for the staff, like a lot of the rest of us, they have difficulty getting tested for COVID.   So this bottom quote I think is particularly powerful.  What are the concerns of CIL staff?  Fear of getting ill, fear of dying, break down thin social fabric, what to do if you have to go back to work, and the schools are closed.   None of those concerns have really changed.   But they are encountering those as well. Next slide. And also, the staff have over caregiver responsibilities.   So some are not doing well emotionally, with caring for kids and home schooling their kids.   And some of their staff have automated to stay home with paid time off to take care of an elderly parent that lives with them. And staff has experienced loss of friends and loved ones because of COVID‑19, and we need to make sure that staff is being taken care of, as well as clients. Next slide. And as I mentioned, a lot of the centers are getting some support for staff salary and benefits through the CARE S act, that is running out.  And people are worried about the long term impacts.   So when this is over, can we come back to work. We are worried about future income if the pandemic continues, and particularly about health insurance coverage, which many folks rely on that coverage.   And will we as an organization make it through this? So the rest of us, we worry about what will happen in the long term. We are concerned about the long term aspects of the economy.   What do you think the administration for community living wants to know, and again, as Lex mentioned, we need to stream line the communication between them and the Department of Health and human services.   The responses are all over the map.  Next slide, please. And there are a number of people that say nice things about the ACL, there's a couple of HHS employees on the call, and most people are getting support for the most part.  They are doing a good job, flying by the seat of their pants and adapting to the circumstances.   ACL has been very understanding ‑‑ (Reading described section). ACL is aware of the needs ‑‑  (Reading described section). Next slide. And in the face of these extraordinary challenges, a number of people mentioned that they are trying to reallocate funding.   So one participant said, we are in the beginning, allow us to be creative with the additional funds, and fill in gaps for nursing home facility transition services, like hotel rooms, meal, housing paid for staff. And my earlier point, no one knows better than those living in the community what the needs of the community are, allow subject matter experts to drive goal setting.   And that is a good point. Next slide. A number of people mentioned that the pandemic has really brought into focus the urgency and importance of transition services, and the role of home and community‑based services, and that is an alternative to nursing home placement.   Nursing homes are a dangerous place to be right now.   So transitioning folks out of nursing homes, keeping them out of nursing homes, is a very important function for CIL. And preaching to the choir, it is a struggle for how people live at home.   They need a go‑to option, and that needs to happen now.   Consumers are fearful they don't have direct care workers available and can be placed into a nursing home facility.   So these services, that are difficult to provide in a pandemic, are essential during a pandemic, and ACL needs to provide resources for CILs to provide that critical work. Next slide. And again, coming back to this technology issue.  The digital divide is something that the disability community has been talking about for at least 25 years, but the inconsistences and access to the internet and quality and complexity of technology is a health risk for people with disabilities.   So so many consumers are unable to access the information that is pushed out via social media, they lack the resources to retain a data plan, or WiFi. Ewith everything closed, if they don't have computers, access, smartphones, and we struggle on report, and we need to make sure that every household has fast internet services, and the same importance of electricity, followed by the equipment and training necessary for interaction.   So we need federal action.   This is not the same as the issue that parents of school aged children are having, but maybe we can start to build common cuzes with the broader issue of access to telecommunications services for children that are studying at home now.   In general, we need to get affordable technology to the people who need it, in many cases, show them how to use it.  So that is a policy imperative here. Next slide. And finally, just independent living services in general are more important than ever.   So I would love this quote, the pandemic pulled back the curtain on the depth of need for the disability community.   It has always existed for this group of people but the situation exacerbated the problem. One administrator said, for some, mental and emotional trauma is short term, for many or most, this is going to be a long term impact on people's mental health.   Peer support is going to be very important for people with disabilities and will broaden demand for services.   This is a good quote to end on.   People with disabilities are worried of getting sick and dying, they want to be safe in their homes, they want essential access to equipment and supplies, they want to be part of the conversation and not an after thought. Okay.  Next slide.  Jenny, I will pass it over to you and mute myself. 
>> All right.  Thank you.  And now I will know over the frequency tables, with the multiple choice questions, so we can look at frequences and trends that illustrated from the open‑ended questions. So next slide, please. So first, we asked how is your CIL continuing operation.   And we see our responses are strengthen frequency and price frequency, so the top three ways the CILs are continuing operations, according to assistance is we are working with consumers with individual phone calls, or frequent wellness checks, and working with consumers via individual computer or smartphone, here you can see the impact of COVID‑19 on those face to face interactions and delivery of services, and also the importance of access to technology in order to access these services.   In terms of how the ‑‑ I will go through the highlights on the table.   In terms of operations of the office, very, very low frequency ‑‑ (speaker far from mic).   And then just over half of our participants say they closed the office entirely, the staff is working remotely, and a little higher frequency of respondents say the office is open with limited contact from the office. We are seeing background systems advocacy and emergency response officials to ensure the needs of the disability community are met.   And we are working with local emergency response barriers and community service organizations to help prevent institutionalization, and some participants are assessing the disability community needs with using their own surveys.   Next slide, please. Okay, what about those core services of the CIL? Which ‑‑  which ones are being offered in what frequency? So the top three core services are information referral, individual advocacy, peer counselling and peer support, and at the bottom the least frequent responses had to do with the transition services, so we are looking at institutional transition and diversion and transition of youth.  As Jay touched on, a lot of the responses in the open ended questions discussed that and how COVID impacted the ability of CILs to provide these transition services, but at the same time they are that much more critical during this pandemic, and we also see, you know, there's a lot of systems advocacy and skills training going on. Next slide.   And then we ask, are there any new or increased services that are directly related to the COVID‑19 pandemic, and just over half of the participants said, yes. And so we asked about what are those services, and we see that people are providing individual COVID‑19 prevention and awareness, education, emergency preparedness and response, and advocacy with emergency and public officials for ensuring the rights of people with disabilities are maintained.   What else are you doing?  People are writing in their responses, a lot of participants are focusing their attention on providing food, water, and other supplies to their consumers that aren't able to access that because of the COVID‑19 pandemic for a number of reasons, and we also have participants indicate they are reaching out to their consumers to assess their needs and that includes emotional support.   There's concern about emotional isolation and the health of consumers, and they are dealing with the COVID related financial needs of their consumers.   Next slide, please. And then we asked about CIL staffing, and we asked whether it has been necessary to reduce staff hours or conduct lay offs.   And most of our participants said no.   Of the ones who said yes, we ask for more information and the participants reported they had to ‑‑ they had to reduce the hours of staff and ‑‑ or do furloughs and lay offs, and they strategically may be laid off, some staff in specific categories, we are laying off corporate staff and administeratech staff who can't perform their job from home.   And others talked about staff reductions due to the fact that staff members can choose unemployment about a more financially viable option, and that relates to care giving responsibilities and budget concerns of the CILs that will make those decisions as well. So that's all I have for those multiple choice questions. I am going to hand it back over to Lex now for the next steps.  
>> Thank you so much, Jenny.  We have heard about the results of the survey that we did. And now I want to talk about the next steps, what we do going forward. Next slide, please. So there are a number of steps that we will take, and let me just say in this context, that we really do appreciate receiving responses to the surveys that we do.  I know that you all who are participating in our surveys, some of you are on the webinar now, and others have participated in other surveys that we have done.  You probably see a number of these.  Some of them are from us, some of them are from others.   And it is very important to us in the research that we do, to have your responses.  It is not valid, unless we hear from a representative sample of the independent living centers, or the independent living consumers, or the group that we are trying to get information from.  So for us, as researchers and for policy people, we really need to have representative samples and that depends on everybody cooperating and helping us. And the only feedback we can give you is that which we are doing now, and we try to do it on a timely becauses.   We try to give you the complete results and if you have further questions, you are encouraged to be in touch with any of us on the research team.   But that is our way of paying you back.  If we can't provide you with valuable information in atume a timely fashion, I don't blame you for not responding to every request we get.  I encourage you to know that the CRIL and ILRU and our partners are very appreciative of the responses we get from you and it is very, very important from us to be able to get representative samples and that means, as many as possible that are able to respond at any time should do so.   And now, I say that really to set up the next discussion here. And that is, given the dynamic nature of the pandemic, we will need to survey you again and perhaps again and again. We believe it is important to track the timeline of the impact of the pandemic on the centers for independent living and on people with disabilities whom we serve. And that makes it necessary for us to be able to consult with you through the survey technology on a repeated basis. So please, when you see the next survey, coming from the CRIL, don't disregard it. Don't say I have already done that. Don't saw I am tired of doing it. Please understand in order for us to affect public policy, we need to have data. And in order to get that data, we need to depend on you. And can  to thank you for doing that, we will give you the feedback as soon as possible and we will do that today and over and over again as long as we can obtain your assistance in this process.  Furthermore, our appreciation is demonstrated by the policy recommendations that we make to the congress, to other palt makers at the state and local level, who have the ability to impact services through the policies that they set. And we can provide this information if we have the data and, again, the data has to depend on you. So that's all to say, thank you again.  But know that in order for us to take the next steps, we will have to consult with you again. We need to find out how the pandemic is affecting services provided by centers on a routine basis, because obviously there will be surges and there will be levelling.  There will be surges again, and there will be dips when we think we have it under control, like we are experiencing now.  We will reopen again. And predictively, we will have some setbacks.  We need to track what is going on in the community.  That brings up another matter.   In order for us to bring well informed policy recommendations, we need to know how the pandemic is differentially affecting the operations of centers and the behavior of people with disabilities in the community, depending on where they are.   Because there will be differential effects.   Our governor in Texas makes decisions that are different than those of the governor of New York and California, Idaho, Nevada, or where else.   Each one of these governors impacts the way in which centers may provide services in their own community.   If the state opens up and says, please return to life as usual, staff your centers, meet people in your centers, that will affect your behavior. So we need to follow through with the research that we've done and track how the centers are differentially responding to changing policies at the state and local level, as wem as those at the federal level. We need to find out if the impact of these policy changes has a differential impact according to where your center is.  Next slide, please. So with that, I think it is important for you to know that we really do depend on you, we appreciate you, we are eager to responsibly paint the picture of the impact of COVID‑19, on independent living by people with disabilities and the centers which serve them throughout the United States.   So thank you again for participating in this survey, let me turn the program back to Jay and we will try to respond to any questions that you all may have. 
>> We are getting a few questions in now.  Now is the time to submit some things, if you want additional information, on the survey findings, or you have comments on the things that we should be monitoring, or this is ‑‑ we have a half an hour on the line if we need it, to talk about how you are coping with the current public health crisis.   To get back to Lex's point while waiting for questions to come in, when we were thinking about this in March and the survey in April, this was early on, and now we are six months into the pandemic.   And we know more than we did now. We know enough about it. And there's also some real interesting policy and service questions that are coming out in this next phase of the pandemic. We want to talk with the sentrs about how school closures are affecting staffing, and we want to talk about current access to services, and some states are going to have to go back to some full or partial closures.  We want to find out the impact of that, and the CARE S act funding is running out for many organizations.   We want to hear how you are weathering that.  Lex's point is an important one, we need to ask where you are located, so we can do regional and state level comparisons and WICHB a within a large state, there is variation we are looking at.  We will modify the survey design and make sure we get one out to each center and it gives us detail about who they are, and where they are, and we are not going to cite you by name in our presentation of findings, but we will be able to do some comparative analyses, which we would not be able to do at this time.  There's a bunch of questions to be asked and answered, and be are committed to doing that as long as we can. And a couple of questions coming in. This is a good one, will KRIL have a public forum on people overcoming their obstacles, we have not gotten that schedule, we can do that.  And I think we've got a lot of IRU staff on the line, to help out with these kinds of communications, and we can certainly help moderate a discussion like that, which is interesting and helpful. And so the answer is, we haven't gotten anything scheduled, we can certainly try and organize a public forum. Jenny, I am going to throw this question to you. How does a provision of services compare to pre‑pandemic operations, does the data reflect the services increase, decrease, or stay the same?  
>> So the ‑‑ the data for those multiple choice questions is limited to the folks that we got to respond to the survey, so we don't have a way to compare it for the prepandemic operations, and it is a frequency of our respondents, it is not ‑‑ like Jay was saying in the next survey, where you are located.   We have the possibility of multiple people on the same centers, not filling out the surveys, it is not representative of the services as a whole, it is representative of the folks who responded to the survey.   It is ‑‑ it points us to the interesting times illuminated in the open ended questions.   
>> People broadly said that services were curtailed, we don't have an idea of, you know, what that meant, other than switching from online to ‑‑ from face to face to more online and phone services.   And the questionnaires did go back a month and a half, two months, so getting the answer for a point in time is a challenge.   Only one of two centers said they shut down during the period we asked about, others are providing services in a different way.  It is up to them to describe how they increased or decreased.   That is related to another question, how many CILs are open to face to face now.  We don't have the answer to that.  At the time of the survey, it was, the minority were providing face to face services.   That changed with the state openings in a lot of cases.   That is another reason to do the survey is to find out how the last couple months have gone.   Any more questions, we are talking to each other here. 
>> There is one from Sue in the chat.  What are we learning that will cause us to modify our services both during the pandemic and after. 
>> I don't want to speak for the centers and center directors, we are all learning how to be flexible and work remotely, and how to come up with new strategies for making and maintaining connections. And we are also, I think we are learning the fact that we can't do any of this on the cheap as a society. We need to invest significantly in resources for disadvantaged groups, like people with disabilities.   And provide adequate income supports and service supports and technology and these are going to be long term needs that we need to address.  I think the center's role as system advocates is going to be critical moving forward.   That was the hope, of this component of the CRIL, is we would give voice to the centers so they can start to talk about ways to modify local state and federal policies to be more responive to the needs of the local communities.   So I hope that we learn about the importance of the services they provide and support them financially and institutionally. We've got a comment that we need to have a focus on the internet, and upgrade free cells to smartphones.   And consumers contact with health professionals.   I agree with that.   The challenge is coming up with policy recommendations to heavily subsidize access to what are often expensive technologies.   But, you know, the small business administration is giving out lots of forgivable loans right now for certain kinds of purposes, and I think we need to come up with some targeted funding to allow centers to purchase the technology they need and also pay them to provide support to consumers that also need to learn how to use those technologies effectively. Any other questions or comments? 
>> There is a question from Nadeen in the chat.  She says our CIL is learning that we need more preparedness for anything that comes. 
>> Sure enough.  Yep. 
>> You know, it has been an awfully long time since American societies dealt with the pandemic, some are clueless political responses to some of this.  It is a new and scary thing, we are all learning. Another comment, home modification is hard hit, contractors cannot do the work and go into the home. So a lot of direct services have been disrupted  disrupted by the pandemic, it is making it difficult for people to get the services they need to live in their home safely.  
>> Let me comment on that, too. That seems to be one of the those issues that is regional or even local in nature.   Here in Houston, contractors are eager to work and the people woo are doing that work don't have any other income, they are trying to find work, they are discounting their services and they are more available to do these kinds of home repairing and home modifications than they typically are, usually they are building homes and working on large contracts.   But thaw don't have those things now to do, because some of that has stopped. And they are depending on local people, individual neighbors, word for word to pass around information about their availability and their skills.   So in some communities, I think people with disabilities and the centers who are facilitating the delivery of the home modifications services may be able to go out shopping a little bit and you can find good discounts and skilled laborers who are willing to come in and do the home modifications.   And now, the thing about it is, the centers themselves should be ready to provide instruction because those specialty groups that are skilled at doing home modifications that know all the rules and measurements and guidelines, may not be the ones for most available. So we need to provide very clear directions of what needs to be done, and what the measurements are, and the design and so on. So it may be an opportunity here.  
>> This is richRichard, I have been in the presenter queue quietly and I would like to answer the question about what centers have learned.   Our data shows it to some extent and the work that ILRU has done with centers have shown us, they learned how to pivot from organizations in in person service organizations and many centers have learned how to work at a distNSH, to work remotely with people, using low tech to high tech to do that.  Whether it be letters, telephone, emails, video conference, and centers have been able to continue advocacy and have addressed important issues in their community that are very much COVID related.  And making the systems and services better as their constituents, consumers, have dealt with food insecurity, we can dress that up by saying food insecurity.  We can say hung and malnutrition.   They have dealt with a lack of long term services and supports, and centers have been able to help with that. They have been able to help people reconstruct personal networks that have failed for services and other community supports which we believe is in to a significant degree responsible for people not going into institutions. Many people have had to go into institutions, but centers have been of significant assistance to people.   They have done innovative work around that area, and do peer support remotely, which helped if people need it to use peers to make decisions about how to remain in the community. The same is true for individual advocacy, theceptrs have provided, they provided it remotely, and for any of the core services, the information referral that is so vital, and services have engaged in helping people that is diversion, remain from going into institutions and have been able to help in transition in some of the most difficult circumstances.   So centers have learned a great deal, and there is much we all have to learn.  We all have to become resilient and to be able to have effective business continuation plans, service continuation plans, and a lot of the profits use the term business continuation, it is a way to continue operation and many centers have done that and have done that well. The additional funding centers have received have been very important to centers, but there are ‑‑ there is much that still must be done and can be done, and the good point about being part of the network for CIL and being age to work with organizations like the IL net and its many partner organizations is we can help centers learn from one another about how to go through this and other emergencies. This, a brand new emergency, and another kind of emergency we have ever experienced before. And centers should be acknowledged for the excellent work they are doing in the community and the changes that they have faced and faced well. 
>> Thank you, Richard.  I have gotten questions about the technology issues.   Mark writes, one of the bullet points, on rural access, many consumers have safe link phones and they do have data plans associated with them. So you can access the internet and use it satisfactorily. So I am pointing out what other people say here.  Thanks for that clarification.   And Scott mentions his center is using CARES Act money to purchase technology they are loaning out to consumers.   That is interesting, we can go on that model.   And finally, an anonymous attendee said nursing homes and group homes should be training residents to use technology like computers and video chat. Because a lot of them are isolated now and they need access to those resources.   So that training and technology is critical inside of these institutional facilities.   People are using CARES act money to buy phone cards for folks.   So if they have more minutes to get the services they need. Our questions are cleared.  And I think we are going to leave, my contact information, we are designing the new survey and sending it in the next month and a half.  I will send my email if there are things you need to say covered, or things you need to see addressed, we are here to amplify your voices and use research and policy to get those concerns out. So stay in contact.  As Lex mentioned, please answer your surveys and answer them completely.  And know that we really appreciate your time and the honesty and the work that you do. So keep up the good work!  This is ‑‑ we are going to be in this for the long haul.  We appreciate the efforts you are making.  We want to make sure that everybody else know ps what you are doing as well.  Thank you for your participation in the survey and webinar.  I think we will sign off, then.  
>> All right.  Looks like we don't have any more questions.   I think we can wrap it up.   Following the webinar, wrapping this up.  Directly following the webinar, you will see an evaluation survey to complete on your screen. We do take your feedback seriously in order to improve our programs.   And I think that's it guys.  A big thanks to all of you for joining us today.  Bye, everybody.