WEBVTT 00:00:00.482 --> 00:00:06.440 - Hi, my name is Michael Shermas and I'm the liaison for the Council for Community Accessibility. And 00:00:06.440 --> 00:00:12.994 - Annabel is wandering back there in the corner. She's also a staff for the Council for Community Accessibility 00:00:12.994 --> 00:00:18.594 - at the City of Bloomington. We're supporting you today. So let me mention a couple of things. 00:00:18.594 --> 00:00:24.791 - First of all, welcome to get around the table. This year's theme is Disability Life Acts. And obviously 00:00:24.791 --> 00:00:27.710 - welcome you, but a couple of housekeeping items. 00:00:27.810 --> 00:00:34.575 - The restrooms are back here. We don't have a formal break for restrooms, but when people are moving 00:00:34.575 --> 00:00:41.408 - around, getting food, or switching over to a table, you can absolutely go to the restroom at then or 00:00:41.408 --> 00:00:48.241 - anytime. And the food and drink will be there until probably about a little after 5.30. So feel free 00:00:48.241 --> 00:00:52.030 - to go up and get more in our mind people at some point. 00:00:52.322 --> 00:01:02.394 - We have tried to strategically place things so that people can move around in wheelchairs from table 00:01:02.394 --> 00:01:12.565 - to table. So we'll hopefully figure all that out. And with that, I think I'm going to turn it over to 00:01:12.565 --> 00:01:22.238 - Leslie to take over from here. All right. Hi, everybody. I'm Leslie Davis, and my mouth is full. 00:01:22.562 --> 00:01:32.703 - I am the chairperson of the Council for Community Accessibility, and I am delighted to welcome you all 00:01:32.703 --> 00:01:42.647 - to gather around the table disability life hacks. And in a moment, I'll have our panelists introduce 00:01:42.647 --> 00:01:51.902 - each other, but a couple of reminders first. So whenever you speak to the group, please first 00:01:52.258 --> 00:02:03.368 - Say your name so everyone in the room knows who's here. And if you haven't already done so, please introduce 00:02:03.368 --> 00:02:13.764 - yourselves to everybody else at your table. And when new people join your table, introduce yourselves 00:02:13.764 --> 00:02:21.918 - to them as well. Okay, so what's going to happen is we will spend the next hour 00:02:23.170 --> 00:02:33.826 - speaking with our panelists. And before we get to that, I would like to ask them to introduce themselves. 00:02:33.826 --> 00:02:43.878 - So we will start with our newest member, our newest Bloomington service provider, immediately to my 00:02:43.878 --> 00:02:52.222 - left. Does this work? You guys can hear me? Excellent. My name is Joseph Stringer. 00:02:52.514 --> 00:03:00.148 - I am the program manager for the Bloomington Fire Department mobile integrated health program. I am 00:03:00.148 --> 00:03:07.781 - new to Bloomington as of three weeks ago. I was hired into the program to come down here. So mobile 00:03:07.781 --> 00:03:15.949 - integrated health in the city of Bloomington has a very, very good reputation. It is provided by community 00:03:15.949 --> 00:03:21.598 - EMTs that are employed with the fire department and they work on resource 00:03:22.114 --> 00:03:29.954 - accessibility for patients throughout the city and their mission is to decrease the amount of emergency 00:03:29.954 --> 00:03:38.097 - care required for patients within the city of Bloomington by getting resources to them before the emergency 00:03:38.097 --> 00:03:45.635 - happens. We want to lower 911 calls by being able to identify where needs exist and get those needs 00:03:45.635 --> 00:03:47.294 - to you where you are. 00:03:50.498 --> 00:03:59.457 - I'm Dana Thompson, and I am a licensed mental health counselor. I'm also the chair of the Dementia Friendly 00:03:59.457 --> 00:04:07.753 - Bloomington Group and the City of Bloomington Commission on Aging. Hello, my name is Haley Spencer. 00:04:07.753 --> 00:04:15.966 - I am the owner of HasTech Accessible Solutions. I'm a certified assistive technology professional. 00:04:16.322 --> 00:04:24.037 - specialize in assistive technology solutions and home modifications for individuals needing our help. 00:04:24.037 --> 00:04:31.751 - Good evening. My name is Misty Kinzinski. I am the legislative director of the National Federation of 00:04:31.751 --> 00:04:39.315 - the Blind of Indiana. The National Federation of the Blind has been in existence since 1940. We are 00:04:39.315 --> 00:04:45.214 - the oldest and largest organization of blind people advocating for ourselves. 00:04:45.698 --> 00:04:53.466 - in terms of civil rights and other similar areas. My particular job is to ensure that blind users are 00:04:53.466 --> 00:04:59.102 - represented both at the state and the national level for our legislators. 00:05:11.778 --> 00:05:18.558 - one intentional mic drops, not unintentional. I'm Karen Williston. I am the president of Mobility Aids 00:05:18.558 --> 00:05:25.536 - Learning Library. We are a local nonprofit organization that provides mobility aids and medical equipment 00:05:25.536 --> 00:05:32.185 - to people who need it free of charge. And I also run a website called the Ability Toolbox, which has 00:05:32.185 --> 00:05:39.294 - lots of disability life hacks on it. And of course, I'm a member of the CCA. It's great to be here tonight. 00:05:42.050 --> 00:05:50.737 - All right, we have a lot of knowledge gathered here at our front table. And let me explain how things 00:05:50.737 --> 00:05:59.254 - are going to work from here on out. So we'll do two lightning round questions just to break the ice 00:05:59.254 --> 00:06:08.281 - before asking each panelist a more specific question. And then afterwards, we'll move to an open question 00:06:08.281 --> 00:06:11.262 - and answer format if we have time. 00:06:12.162 --> 00:06:20.139 - If we go on so long that we don't have enough time to do open question and answer up here, we will indeed 00:06:20.139 --> 00:06:27.739 - have time to do it at our individual tables. All right, so here is the first question I want to pose 00:06:27.739 --> 00:06:35.264 - to everybody on the panel. And whoever wants to start should feel free to start. We're looking for, 00:06:35.264 --> 00:06:41.886 - and not everybody has to answer every question, but we're looking for about two minutes 00:06:43.074 --> 00:06:52.056 - Okay, and so, oh, I'm supposed to pick somebody to start. So, okay. The question is, if you 00:06:52.056 --> 00:07:02.209 - have a disability, what one life hack do you wish you'd known way earlier, and how does it improve your 00:07:02.209 --> 00:07:07.774 - quality of life? Karen, I'm gonna ask you that question. 00:07:11.650 --> 00:07:17.666 - I think the most important thing is having the right mobility aid for your needs, whatever those may 00:07:17.666 --> 00:07:23.742 - be. When I was a kid, my parents always wanted me in a manual wheelchair, and I couldn't push myself. 00:07:23.742 --> 00:07:29.342 - It wasn't any good for me. As soon as I got a power wheelchair, I could get around on my own. 00:07:29.342 --> 00:07:31.486 - I was free. I could be independent. 00:07:31.842 --> 00:07:38.305 - And so just understanding that looking at what your individual needs are, it's going to be different 00:07:38.305 --> 00:07:44.896 - for every person. What is going to give you the most independence? What is going to work for your life 00:07:44.896 --> 00:07:51.551 - situation? And also just not to let ableism, internalized ableism hold you back in what you're actually 00:07:51.551 --> 00:07:56.734 - using for your mobility. I don't want to use a wheelchair because that's somehow 00:07:57.026 --> 00:08:04.780 - stigmatized or like I'm giving up, but if that gives you the ability to go out and do things and have 00:08:04.780 --> 00:08:12.459 - a good life, then that's the right mobility aid for you. And of course, also different mobility aids 00:08:12.459 --> 00:08:20.213 - at different times, depending on your needs and if you have a fluctuating condition. I couldn't agree 00:08:20.213 --> 00:08:24.318 - more. All right. Let's see. For somebody that doesn't 00:08:24.898 --> 00:08:36.229 - identify on our panel as having a disability that might require home modifications. What is one inaccessible 00:08:36.229 --> 00:08:46.624 - aspect of your home that you'd need to change quickly if you had an injury or a new disability? And 00:08:46.624 --> 00:08:52.030 - how would you go about changing it? How about Dana? 00:08:57.314 --> 00:09:03.467 - Absolutely. Actually, we've been living in our house for about 13 years now. And I literally said to 00:09:03.467 --> 00:09:09.682 - my husband out loud when we walked in to decide if we wanted to buy it, if I had to live on one level 00:09:09.682 --> 00:09:15.774 - of this house one day, could I do it? And the answer was, yeah, but we'd have to do a little bit of 00:09:15.774 --> 00:09:22.050 - work. I think for me, the one thing that comes to mind, well, two things come to mind. One is that our 00:09:22.050 --> 00:09:26.558 - laundry is downstairs in the basement. And so that would need to come up. 00:09:27.010 --> 00:09:34.332 - And the other thing is that our back stairs, which is the door we typically come in, used to be exterior 00:09:34.332 --> 00:09:41.584 - stairs, and they were really rough, uneven stone steps, and that would be very problematic. So it would 00:09:41.584 --> 00:09:48.557 - take some big work. Luckily, I know pretty cool people in town, like Lauren Cowan from HY's Design, 00:09:48.557 --> 00:09:56.158 - that know how to handle those things, and I'm fortunate enough to be able to afford that when that's needed. 00:09:56.386 --> 00:10:05.225 - But those are the primary things that come to my mind, is that I would just be limiting the space that 00:10:05.225 --> 00:10:13.979 - I use within my house, and it would take fairly significant modifications. I'm looking knowingly down 00:10:13.979 --> 00:10:22.818 - at my friend Karen, and over at my friend Debra, because this is a moment where I'll let you know that 00:10:22.818 --> 00:10:25.822 - we are trying to lobby for the new 00:10:26.050 --> 00:10:38.571 - unified development ordinance to pay more attention to building things without steps if there's no obvious 00:10:38.571 --> 00:10:50.390 - reason why they're needed. So then your renovation would be a lot cheaper. Okay. All right. So would 00:10:50.390 --> 00:10:55.422 - anybody else like to answer that question? 00:10:55.842 --> 00:11:08.647 - Haley or Misty or Joseph or either question. So my wife and I purchased our home in 2021. It is a two 00:11:08.647 --> 00:11:21.955 - story home with an unfinished basement. And the first thing that I did to modify that home was the stairs 00:11:21.955 --> 00:11:25.470 - that go to the second story 00:11:25.666 --> 00:11:30.681 - a half banister and then it turns into a wall as it goes up. And the first thing I did was take out 00:11:30.681 --> 00:11:35.796 - the half banister entirely. You think, well doesn't that get rid of the hand hold that you might need 00:11:35.796 --> 00:11:40.812 - coming down the stairs? And there was a hand hold on the other side of the stairs, but the reason I 00:11:40.812 --> 00:11:45.827 - did it was as soon as I walked in the house as a paramedic, I looked at it and went, there's no way 00:11:45.827 --> 00:11:50.942 - any of the equipment from an ambulance can get up the stairs because of the tight turn it would take. 00:11:51.330 --> 00:11:58.441 - So by taking out the banister, now you can get the equipment up the stairs if there's an emergency upstairs. 00:11:58.441 --> 00:12:05.486 - So I was already kind of looking at it, but I looked at it from an emergency standpoint and not an everyday 00:12:05.486 --> 00:12:12.075 - livability standpoint. Now, doing the work that I do now, every single rug on our hardwood floors is 00:12:12.075 --> 00:12:18.664 - taped down underneath. Every single bump or anything else in the house that anybody could stub a toe 00:12:18.664 --> 00:12:19.838 - on or have issues 00:12:20.130 --> 00:12:28.872 - coming through has already been removed because it's something, once you see it, that you recognize 00:12:28.872 --> 00:12:37.789 - that it's a problem. And so it's thinking through the problems before they happen. Great advice. It's 00:12:37.789 --> 00:12:46.881 - funny how the needs of emergency responders and the needs of residents can be, in this odd way, so much 00:12:46.881 --> 00:12:48.542 - in conflict. Yeah. 00:12:48.834 --> 00:12:58.992 - I can move on to the next question, which is, what's the first piece of advice you share to help another 00:12:58.992 --> 00:13:09.151 - person transition through the challenges of a new or changing disability? And I would love to hear first 00:13:09.151 --> 00:13:17.374 - from Haley and then from Misty on this. I think in my experience, transitioning with 00:13:17.634 --> 00:13:25.550 - a new disability has been particularly difficult for a lot of my clients and accepting that now they 00:13:25.550 --> 00:13:33.622 - have to do something maybe in a different way. And it doesn't have to completely change their process, 00:13:33.622 --> 00:13:41.694 - it might change their process, but I think change is hard for everybody and so trying to get them from 00:13:42.114 --> 00:13:49.740 - where they were to know where they are and what they want to accomplish is usually my job. So what is 00:13:49.740 --> 00:13:57.292 - it that your goal is in mind that you're trying to do? And a lot of folks want to say, well, this is 00:13:57.292 --> 00:14:04.993 - how I used to do it. This is how I'm used to doing it. And so for me, trying to get them to transition 00:14:04.993 --> 00:14:10.302 - slowly but understand that it sometimes takes time, our brains are not 00:14:10.914 --> 00:14:18.985 - hardwired to accept change very easily. And so typically we give it two, three weeks of consistent use 00:14:18.985 --> 00:14:26.822 - and making sure that we're paying attention to some of the key factors, which are if you're wanting 00:14:26.822 --> 00:14:32.542 - to accomplish it, is it causing you pain? Is it causing you excess time? 00:14:32.930 --> 00:14:41.789 - Is it causing you excess energy? Then we need to probably have some sort of intervention to be able 00:14:41.789 --> 00:14:50.826 - to help you to reach your goals in that. Right, okay, so I think my one piece of advice, if I have to 00:14:50.826 --> 00:14:59.774 - give one piece of advice to anyone who is newly disabled, is first and foremost, as soon as you can, 00:15:00.514 --> 00:15:06.916 - try and find other people with your disability or a similar disability to become role models for you. 00:15:06.916 --> 00:15:12.941 - I mean, there are certainly plenty of well-adjusted, fulfilled disabled folks living our lives, 00:15:12.941 --> 00:15:19.343 - you know, realizing that our disability is not the kind of tragedy that the wider society portrays it 00:15:19.343 --> 00:15:25.870 - as. And you know what all of this ableism we find in media and other aspects of society, a lot of times 00:15:25.870 --> 00:15:26.686 - when someone 00:15:26.978 --> 00:15:33.113 - develops a new disability, they think their life is over. I mean, certainly with blindness, I would 00:15:33.113 --> 00:15:39.249 - say among most other disabilities especially, they're like, how am I gonna do this? And if they can 00:15:39.249 --> 00:15:45.384 - get exposure to other blind people, successful blind people, fulfilled blind people, and partner up 00:15:45.384 --> 00:15:51.581 - with them as role models and mentors, as soon as that disability, as soon as that diagnosis comes to 00:15:51.581 --> 00:15:53.790 - be, I think that that's going to do 00:15:54.114 --> 00:16:00.629 - That's going to move mountains for them, and it's going to allow them to realize that they can continue 00:16:00.629 --> 00:16:06.894 - to live the lives they want. We do have that exact expression within the National Federation of the 00:16:06.894 --> 00:16:13.221 - Blind. You can live the life you want. Blindness is not what holds you back. So again, yeah, I think 00:16:13.221 --> 00:16:19.737 - as it was to summarize, try to find other people with your disability that are still living their lives 00:16:19.737 --> 00:16:23.934 - and living good lives. I love it. Thank you so much. That's great. 00:16:24.386 --> 00:16:34.992 - All right, now I'm gonna ask you some very direct questions. And let's start with Dana. Dana, what are 00:16:34.992 --> 00:16:46.112 - the best mindset and lifestyle changes to help a senior or someone with dementia age in place successfully, 00:16:46.112 --> 00:16:50.334 - in your opinion? That is a big question. 00:16:50.978 --> 00:16:58.112 - One of the primary things that I talk with my clients about is that there is this belief that it's kind 00:16:58.112 --> 00:17:05.177 - of all or nothing when you get diagnosed with dementia, that it's either at home and we're just taking 00:17:05.177 --> 00:17:12.105 - this all on ourselves or I have to live in a nursing home. And there is a lot of support in between, 00:17:12.105 --> 00:17:18.622 - very similar to what Misty was saying, a diagnosis like this doesn't mean giving up your life. 00:17:19.106 --> 00:17:25.669 - People can live for 20 years with dementia, and that's a long time to just say, well, I'm going to sit 00:17:25.669 --> 00:17:32.041 - back and wait until this is over. So getting out of that stigmatized mindset, getting familiar with 00:17:32.041 --> 00:17:38.476 - what is available in our community, and seeing that, yes, you may have to change the way that you do 00:17:38.476 --> 00:17:45.103 - things, but that doesn't mean you have to give up what you're doing. It's so important. I think another 00:17:45.103 --> 00:17:48.862 - piece of that puzzle that I find particularly important is 00:17:49.250 --> 00:17:57.042 - creating something that is purposeful and meaningful for each person. There is a lot of talk about let's 00:17:57.042 --> 00:18:04.462 - make activities for people living with dementia, but it's not enough to just fill our time. Just as 00:18:04.462 --> 00:18:12.551 - the rest of us wouldn't be happy with just filling our time, we want to do something that matters, something 00:18:12.551 --> 00:18:17.374 - that engages us with community and with the people that we love. 00:18:17.634 --> 00:18:24.935 - And the people who find ways to do that typically become the people that live the best with this. I 00:18:24.935 --> 00:18:32.674 - wanna echo another thing that Misty said too. The first thing I always tell people is I'm gonna introduce 00:18:32.674 --> 00:18:40.266 - you to somebody who's living well with this. Because it's really important to see that that is possible 00:18:40.266 --> 00:18:46.910 - and not just hearing from me. Thank you so much. That was great and this is a perfect time 00:18:47.138 --> 00:18:55.952 - for a shout out for the Council for Community Accessibility because if you don't already join our meetings, 00:18:55.952 --> 00:19:04.194 - I guarantee that you will find community there and connections there. Thank you so much. Let's go to 00:19:04.194 --> 00:19:12.844 - Karen. Karen, what were your two favorite success stories of mall clients transitioning to a new mobility 00:19:12.844 --> 00:19:16.190 - aid that improved their quality of life? 00:19:19.330 --> 00:19:26.287 - We had this wonderful gentleman, I'll call him Red, and he's a very happy-go-like guy, and he's always 00:19:26.287 --> 00:19:33.109 - all around town, but he was having trouble getting around, and he needed a power wheelchair. We gave 00:19:33.109 --> 00:19:39.864 - him a power wheelchair, and he did great with it, but he was hoping to get a scooter, so eventually 00:19:39.864 --> 00:19:46.889 - we were able to train him for a scooter, and he just was able to enjoy life so much, and he became more 00:19:46.889 --> 00:19:48.510 - motivated to try to get 00:19:48.834 --> 00:19:54.952 - a chair for himself through Medicare and Medicaid. And eventually, he was able to do that. And so I 00:19:54.952 --> 00:20:01.070 - think just getting him out there. And also, he's just such a wonderful person. He always just takes 00:20:01.070 --> 00:20:07.433 - such great care of his mobility aids. Whenever he brought stuff in, it'd be perfectly clean, everything 00:20:07.433 --> 00:20:13.613 - he returned to us in great condition. Just a wonderful guy. So that's, I think, a really good one of 00:20:13.613 --> 00:20:15.326 - somebody that we've helped. 00:20:16.034 --> 00:20:22.315 - We've had folks come even from other parts of the state to get equipment sometimes because they can't 00:20:22.315 --> 00:20:29.089 - find it where they are. Helped a little boy and his family who came down, could not find the right wheelchair 00:20:29.089 --> 00:20:35.370 - for him, and we had one. Gosh, there's so many stories. We don't even always know the impact we have, 00:20:35.370 --> 00:20:42.206 - but sometimes I'll just be scrolling through a Facebook group and someone saying, hey, where can I get a cane? 00:20:42.338 --> 00:20:49.773 - there'll be two or three people commenting and saying, hey, I got one from mall and it's really helped 00:20:49.773 --> 00:20:57.065 - me. So yeah, I just think that it really makes a difference to have folks getting the equipment they 00:20:57.065 --> 00:21:04.500 - need and getting back out there and enjoying life. Those are some great examples. I was thinking also, 00:21:04.500 --> 00:21:11.358 - we so often help people at Mobility and Slimming Library who need something like a wheelchair. 00:21:11.778 --> 00:21:20.978 - But one of the other things that we do that I love is that we can provide equipment short term. So I 00:21:20.978 --> 00:21:30.269 - remember somebody whose mother in her 80s was coming to visit and they contacted mall and said, well, 00:21:30.269 --> 00:21:39.651 - can we get a transport wheelchair and maybe a walker, maybe not, but also a shower bench just for this 00:21:39.651 --> 00:21:40.926 - long weekend. 00:21:41.602 --> 00:21:49.031 - And then I thought, those of us who travel and need mobility aids could have such a thing in every place 00:21:49.031 --> 00:21:56.248 - we go. That would be amazing. Yes, we get a lot of folks around the holidays and around IE graduation 00:21:56.248 --> 00:22:03.606 - who need equipment just temporarily. And we help out with that as much as we can, absolutely. But yeah, 00:22:03.606 --> 00:22:09.054 - it's the difference between that person saying, I can visit you and I can't. 00:22:10.850 --> 00:22:19.644 - All right, let's hear from Joseph. What are one or two of the most effective adaptations you've seen, 00:22:19.644 --> 00:22:28.438 - get back here. I thought it was a skate rink rolling away in this chair. Okay, what are one or two of 00:22:28.438 --> 00:22:37.318 - the most effective adaptations you've seen that are inexpensive and accessible to renters to help them 00:22:37.318 --> 00:22:39.646 - stay where they're living? 00:22:39.874 --> 00:22:47.684 - That's a big piece of it is for renters, the statistics I pulled today showed that less than 6% of people 00:22:47.684 --> 00:22:55.568 - identifying as having a disability report being homebound, which means there's 94% of people that identify 00:22:55.568 --> 00:23:03.230 - with having a disability that need to be able to get into and out of their homes reliably. And so there 00:23:03.230 --> 00:23:08.830 - are some things that you can do. It's not always easy to widen the doorway. 00:23:09.282 --> 00:23:17.635 - when you're trying to get into an apartment. But for between five to $20, you can actually get expandable 00:23:17.635 --> 00:23:25.673 - hinges. So the hinge changes when it opens and adds an additional two inches of entry space as you're 00:23:25.673 --> 00:23:33.790 - trying to navigate a walker or a cane or a chair through the doorway. Keyless locks. So there are lock 00:23:33.790 --> 00:23:39.070 - adapters that can go onto deadbolts on the back that are Bluetooth 00:23:39.234 --> 00:23:46.406 - accessible that you can use them and it will turn the deadbolt for you with Bluetooth access. When you 00:23:46.406 --> 00:23:53.508 - look for things like keyless locks, also look for things like handles instead of knobs. And those are 00:23:53.508 --> 00:24:00.610 - cheap, easy ways that people who have apartments can request better accessibility for their apartment 00:24:00.610 --> 00:24:07.294 - that are not difficult for a maintenance person to come in and install and set up for the home. 00:24:07.778 --> 00:24:14.007 - And because so many of my patients that I work with, we worry about falls. Some of the things that I 00:24:14.007 --> 00:24:20.360 - look for in a home when I go through the home is, I've already mentioned, having rugs that are secure, 00:24:20.360 --> 00:24:26.898 - things along those lines, but some things that people don't think about. If you have a hardline telephone 00:24:26.898 --> 00:24:33.313 - in the house, is there a hardline telephone on the floor so that if you fall, you can get to it to call 00:24:33.313 --> 00:24:37.630 - for help? If you don't have a hardline telephone and all you have are 00:24:37.794 --> 00:24:43.994 - cell phones, plug in a Bluetooth speaker that can activate your Siri or your voice adapter and keep 00:24:43.994 --> 00:24:50.257 - that plugged in on the floor so that you can turn it on and use the Bluetooth through the speaker to 00:24:50.257 --> 00:24:56.457 - make the phone call for you. Those are very simple things that you don't think about them until you 00:24:56.457 --> 00:25:02.658 - need it. So that's always a recommendation I make for a lot of my patients. If there's a risk for a 00:25:02.658 --> 00:25:03.774 - fall on the home, 00:25:04.226 --> 00:25:14.838 - Make sure that you have a way to call someone for help from the floor. That is great advice. It's so 00:25:14.838 --> 00:25:25.975 - interesting that you talk about something being on the floor level. I do a lot of work in other countries 00:25:25.975 --> 00:25:29.758 - where having an emergency pull cord 00:25:30.658 --> 00:25:39.994 - in any accessible bathroom, any accessible hotel room is the standard. And people are always tying them 00:25:39.994 --> 00:25:49.060 - up because they get in the way. And that's a big annoyance. But the whole point is, if you're on the 00:25:49.060 --> 00:25:56.062 - ground, you need to be able to reach something. All right, let's go to Misty. 00:25:56.354 --> 00:26:02.968 - Can you tell us what are the top three tools or tech solutions you would recommend to someone who's 00:26:02.968 --> 00:26:09.054 - in the process of losing vision? Right. So I'm going to recommend for you guys today things 00:26:09.054 --> 00:26:16.065 - that theoretically anyone can get. It's not special disability technology. You don't have to go searching 00:26:16.065 --> 00:26:22.679 - high and low to try to find some specialized piece of equipment or tool. The first one I'm going to 00:26:22.679 --> 00:26:24.862 - recommend is your simple iPhone. 00:26:26.018 --> 00:26:31.732 - Well, androids are pretty close as well as far as what they can offer. But for my example, I'll use 00:26:31.732 --> 00:26:37.446 - the iPhone. So why an iPhone? Well, first of all, an iPhone has a built-in screen reader. So anyone 00:26:37.446 --> 00:26:43.388 - who gets an iPhone has that screen reader, which basically, for those who aren't familiar, it will read 00:26:43.388 --> 00:26:49.388 - the screen aloud to someone who can't see it. So every single iPhone has that. Second, instead of buying 00:26:49.388 --> 00:26:53.502 - a bunch of expensive pieces of blindness-related standalone technology, 00:26:53.794 --> 00:26:59.817 - you can get apps that will do the exact same kinds of things for free or very cheaply. So it becomes 00:26:59.817 --> 00:27:05.899 - a multipurpose accessibility device. And I'll mention a couple of these apps now. They're both, well, 00:27:05.899 --> 00:27:11.982 - one is paid, one is a for-profit company, one is free. The free one is called Be My Eyes. Some of you 00:27:11.982 --> 00:27:18.362 - may have heard of it on the news. It received some coverage a number of months ago now, I think. Basically 00:27:18.362 --> 00:27:23.550 - what this is is that a sighted person on their phone can look through a blind person's 00:27:23.842 --> 00:27:28.881 - camera and help the blind person with whatever they need. If they need a pair of eyes for something, 00:27:28.881 --> 00:27:33.970 - they can describe it to them. That's a free app. If you're blind, you can download it. Say I'm blind. 00:27:33.970 --> 00:27:38.859 - If you're sighted, download it, and you can become a volunteer. Aira, A-I-R-A, is the second app. 00:27:38.859 --> 00:27:43.898 - It is paid. It is for profit, but the advantage of that is it has a lot of other bells and whistles. 00:27:43.898 --> 00:27:48.887 - They can tap right into your computer, for instance, and assist you with things. The agents can, or 00:27:48.887 --> 00:27:53.726 - some of them are specialized in orientation mobility, basically helping a blind person navigate. 00:27:54.018 --> 00:28:00.095 - can get around. And again, you can be a blind person and download it. You can sign up. It's a totally 00:28:00.095 --> 00:28:06.291 - remote job if folks are interested in actually signing up to be an agent. Second overall, though, piece 00:28:06.291 --> 00:28:12.369 - of technology I would recommend are the Meta smart glasses. Meta has taken notice recently that a lot 00:28:12.369 --> 00:28:18.505 - of us blind folk have been using it. And they have added a lot of accessibility features. They are now 00:28:18.505 --> 00:28:21.246 - giving away through the VA and other sources. 00:28:21.890 --> 00:28:27.111 - free mediglasses to blinded veterans. You don't have to have been blinded in combat. You can be a veteran, 00:28:27.111 --> 00:28:32.040 - and if you're blind, you can get those free mediglasses. There's been a lot of talk about AI and the 00:28:32.040 --> 00:28:36.530 - negative impacts of it, but I really think that disabled people like us should be more part 00:28:36.530 --> 00:28:41.849 - of the conversation because it has also done wonders for especially the blind community and other disability 00:28:41.849 --> 00:28:46.875 - communities. You can use AI, for instance, again, to tell you what's in front of you. You can also use 00:28:46.875 --> 00:28:49.022 - the mediglasses with apps like IRB My Eyes. 00:28:49.218 --> 00:28:55.510 - You can have an agent there on the other end telling you, again, what they're seeing through the glasses. 00:28:55.510 --> 00:29:01.447 - Third piece of technology would be, well, a simple Bluetooth keyboard. One of the first things that 00:29:01.447 --> 00:29:07.502 - a blind person notices about the iPhone or other phones is that darn old on-screen keyboard. It takes 00:29:07.502 --> 00:29:13.913 - forever to type on it, and it's very, very slow. It's hard to see if you have low vision in many instances. 00:29:13.913 --> 00:29:17.534 - Just connecting up a little Bluetooth keyboard to your phone 00:29:17.986 --> 00:29:24.315 - It's tactile, you know, it'll make you type a lot more quickly. So yeah, those are my three things. 00:29:24.315 --> 00:29:31.087 - Those are great. Missy, can you explain how the meta glasses work for the user? Sure. So the AI basically, 00:29:31.087 --> 00:29:37.542 - all you do once you get them set up is you put them on your face, and then all you have to do is, I'm 00:29:37.542 --> 00:29:43.934 - not going to say the full phrase because it might set them off if they're in here. You can say, hey, 00:29:43.934 --> 00:29:46.782 - META, hey, META, and you hear a little beep. 00:29:46.882 --> 00:29:52.122 - And then you can just basically ask it, like, look and tell me what you see in front of me, or look 00:29:52.122 --> 00:29:57.415 - and tell me what I'm holding. You can identify maybe a shirt, color of a shirt, what's on a t-shirt, 00:29:57.415 --> 00:30:02.708 - what's on a can of vegetables, like, what is this jug of stuff that I have in my refrigerator that I 00:30:02.708 --> 00:30:08.158 - can't really see the label on. So you can get pretty detailed descriptions of a room that's around you. 00:30:08.386 --> 00:30:13.629 - And so, yeah, better AI is good for that. It's obviously like any AI, it's going to hallucinate sometimes, 00:30:13.629 --> 00:30:18.676 - it's not going to be perfect. But it's definitely, it's been helpful to me, it's been helpful to a lot 00:30:18.676 --> 00:30:23.625 - of us. And as I say, you can use it like I would be my eyes, and so you can get a live person if you 00:30:23.625 --> 00:30:27.006 - need to to confirm as well. Basically, you just, there's a bit of a, 00:30:27.202 --> 00:30:33.348 - challenge to get those apps hooked up right now because they're not part of the native ecosystem for 00:30:33.348 --> 00:30:39.616 - Meta yet. But it can certainly be done at this point. And you can basically just open your phone, open 00:30:39.616 --> 00:30:45.885 - one of those apps, Be My Eyes Ira, and then that app will connect to your camera on your Meta glasses. 00:30:45.885 --> 00:30:51.848 - And then you can have the live human agent see through those and help you with whatever you need. 00:30:51.848 --> 00:30:54.526 - Very cool. Thank you. All right. And Haley. 00:30:55.202 --> 00:31:02.476 - What's one of the most successful home modifications you have suggested for a client and why was it 00:31:02.476 --> 00:31:10.041 - so successful? So I think the the one I'm going to talk about one that I think would have been the most 00:31:10.041 --> 00:31:17.315 - successful and unfortunately the funding source wouldn't allow us to complete it and then I'm going 00:31:17.315 --> 00:31:19.134 - to give you a rundown on 00:31:19.458 --> 00:31:30.134 - a modification that was ground up built for a second. So one of the better modifications that I recommended 00:31:30.134 --> 00:31:40.711 - was actually putting an elevator into a home because there wasn't access, the way the home was structured, 00:31:40.711 --> 00:31:45.950 - there wasn't access to be able to get to the stairs, 00:31:46.274 --> 00:31:54.871 - in a way that was going to work for the wheelchair user. So that one would have been the most successful 00:31:54.871 --> 00:32:03.304 - I think because otherwise the home needed very little modifications because whenever it was built they 00:32:03.304 --> 00:32:09.854 - had paid attention to most things except for the stairwell. The most successful 00:32:10.018 --> 00:32:19.505 - ground up build. I actually worked with Habitat for Humanity to design a ground up build home that was 00:32:19.505 --> 00:32:28.899 - accessible. So we did I think 60 inch hallway that was lined up with the front door. The flooring was 00:32:28.899 --> 00:32:38.846 - actually the same polished concrete that we're on. So the breakdown of polished concrete over time, there's 00:32:39.394 --> 00:32:48.039 - always a few factors to consider when you're talking about accessibility and expense and what makes 00:32:48.039 --> 00:32:56.856 - the most sense. And so the longevity of concrete, polished concrete over time is great for navigating 00:32:56.856 --> 00:33:05.501 - using a wheelchair. And then we made sure to do the simple things too. So no quarter round. Quarter 00:33:05.501 --> 00:33:08.094 - rounds around the baseboards, 00:33:08.450 --> 00:33:16.769 - it takes away about an inch, right, off of the sides of your hallway. And a lot of times it's just a 00:33:16.769 --> 00:33:25.500 - snack hazard for wheelchairs whenever they're going down the hallway. We also did pocket doors throughout 00:33:25.500 --> 00:33:31.678 - the entire build. So rather than going to a barn door, which then cuts off 00:33:32.002 --> 00:33:39.376 - some room in our hallway, which barn doors are, a sliding barn door is a great accessibility option 00:33:39.376 --> 00:33:46.824 - for modifications afterwards, but we were doing a ground up build. We completely designed this home. 00:33:46.824 --> 00:33:54.419 - So pocket doors all around, and then we were able to achieve the five foot turn radius in every space, 00:33:54.419 --> 00:34:00.318 - especially because we've got that nice big hallway. We did a double pocket door 00:34:00.482 --> 00:34:09.038 - on the bedroom so that the five foot turn radius, if we opened both of those doors, we had a great turn 00:34:09.038 --> 00:34:17.430 - radius. So I think that that was probably the most successful modification that I could have made was 00:34:17.430 --> 00:34:25.658 - just to build a completely custom home. Well, following up on that, can you tell us what would have 00:34:25.658 --> 00:34:28.126 - to be in the bones of a house 00:34:28.418 --> 00:34:36.533 - in order to consider putting in a residential elevator? Where might it work that we're not? Yeah, so 00:34:36.533 --> 00:34:44.647 - typically, and this isn't going to be necessarily my niche area, right? I can tell you where some of 00:34:44.647 --> 00:34:53.726 - the better spots might be, but we do have to have a contractor come in to take a look at things. Larger closets. 00:34:54.146 --> 00:35:01.902 - that have open spaces above them sometimes can be modified into an elevator shaft. The place where we 00:35:01.902 --> 00:35:09.505 - actually found was a double fireplace. So the fireplace was in the upstairs and the downstairs. And 00:35:09.505 --> 00:35:17.565 - so it would have just been an external add-on for those spaces. And the framing was already there because 00:35:17.565 --> 00:35:20.606 - of the fireplace, the double fireplace. 00:35:22.178 --> 00:35:30.512 - I think larger closets would probably be a little bit more common for where it's going to have to be 00:35:30.512 --> 00:35:38.847 - in the upstairs versus a downstairs space. While I've got you on the subject or anybody else who has 00:35:38.847 --> 00:35:47.099 - experience with this, a lot of people think, oh, I've got however many steps and the ramp I'll have 00:35:47.099 --> 00:35:51.390 - to build to make those steps, you know, bridgeable. 00:35:51.778 --> 00:35:59.272 - is going to be so long and I don't have room for it. Does anybody have experience with sort of either 00:35:59.272 --> 00:36:06.619 - indoor or outdoor platform lifts? People must think, oh, they're so expensive, I couldn't possibly. 00:36:06.619 --> 00:36:14.039 - But I'm not so sure that's true. Yeah, I think platform lifts are becoming much more common. I think 00:36:14.039 --> 00:36:20.798 - that I'm not sure what their top end range is, because I know that there is a top end range 00:36:20.930 --> 00:36:30.568 - somewhere for platform lifts and so whenever like the elevator situation that I was looking at was going 00:36:30.568 --> 00:36:40.022 - to be like upwards of 35 feet of ramping which is a lot of feet of ramping and so a lift may have been 00:36:40.022 --> 00:36:48.926 - appropriate but we actually have turns and like several items for the front door access and then 00:36:49.154 --> 00:36:56.439 - I think that they're actually becoming much more common for garage access. So pulling into a garage, 00:36:56.439 --> 00:37:04.229 - and usually a garage has no more than three steps. So platforming there would probably be a great solution. 00:37:04.229 --> 00:37:05.022 - Wonderful. 00:37:12.674 --> 00:37:18.383 - on a couple of platform lifts that actually go on the stairs, almost like the chair lifts, but they 00:37:18.383 --> 00:37:24.093 - have a platform for a wheelchair. I don't know anything about them beyond that I've been wanting on 00:37:24.093 --> 00:37:29.859 - them, and they held my chair. And then, of course, those exterior ones. I've also seen them added to 00:37:29.859 --> 00:37:35.626 - the exterior of a building, like adding those, especially the ones that do a single floor. I've seen 00:37:35.626 --> 00:37:41.278 - those added to the outside of the buildings before, so that's maybe another option for some folks. 00:37:41.634 --> 00:37:47.374 - Yeah, unfortunately, it's definitely one of those things where when you're doing new construction, it's 00:37:47.374 --> 00:37:52.893 - just so much easier. And the cost is minimal. People think, oh, to build a home to be accessible is 00:37:52.893 --> 00:37:58.633 - going to be really expensive. Actually, can I ask Haley a question? How much more do you think it costs 00:37:58.633 --> 00:38:03.710 - to build that house with the accessibility features than if it had been built just regular? 00:38:08.578 --> 00:38:17.360 - So the home that we designed from the ground up, they took a three bedroom and paired it down to a two 00:38:17.360 --> 00:38:26.141 - bedroom. So really it was just an additional bedroom sizing, but the additions for accessibility were, 00:38:26.141 --> 00:38:34.923 - I think, under $20,000. Whereas you have modifications that we're doing. So an elevator, for instance, 00:38:34.923 --> 00:38:37.566 - is going to be very expensive. 00:38:37.794 --> 00:38:45.543 - But some modifications happening around the states that vocational rehabilitation is helping do might 00:38:45.543 --> 00:38:53.292 - be upwards of 30, 50, sometimes in the $100,000 range. Just because we're a lot of times taking every 00:38:53.292 --> 00:39:01.496 - single doorway and expanding it. We're taking rooms and expanding them. We're taking hallways and expanding 00:39:01.496 --> 00:39:06.814 - them. We're taking a bathroom and having to modify it. So many times, 00:39:07.266 --> 00:39:17.284 - The homes that are being modified are having to have a total overhaul. And I would guess that you're 00:39:17.284 --> 00:39:27.797 - saving at least 50%, if not 75% by doing a ground-up build. I think ground-up build too is a great option 00:39:27.797 --> 00:39:34.046 - if you can find the land too. That's always the kicker, right? 00:39:34.434 --> 00:39:41.453 - But whenever we looked at home sites, we actually looked for the flattest areas possible, but you also 00:39:41.453 --> 00:39:48.336 - get to customize then, is it in an area that's going to be accessible to a bus route, right? Does it 00:39:48.336 --> 00:39:55.218 - have sidewalks? Which that's not something that whenever you get a funding source to come in to help 00:39:55.218 --> 00:40:00.670 - with the whole modification, it can't necessarily control those factors either. 00:40:03.266 --> 00:40:11.504 - Fantastic, thank you. All right, before I open it up to questions from the audience, does anybody here 00:40:11.504 --> 00:40:19.503 - on the panel have anything they'd love to add to any one of these things or something you feel like 00:40:19.503 --> 00:40:22.142 - you just really want to tell us? 00:40:30.018 --> 00:40:36.488 - I'll just say I appreciate being asked to be on this panel because a lot of times we think of people 00:40:36.488 --> 00:40:43.279 - with brain change as being separate from the disability conversation. And I think even some people living 00:40:43.279 --> 00:40:49.749 - with dementia wouldn't consider themselves as having a disability, but there is so much overlap. And 00:40:49.749 --> 00:40:56.412 - some of the needs are so similar. But I think what this panel has done a really great job of is showing 00:40:56.412 --> 00:40:58.462 - us that there can be very cheap 00:40:59.042 --> 00:41:05.911 - and easy solutions to things all the way up to building an entire home, right? One of the places where 00:41:05.911 --> 00:41:12.713 - I see a lot of overlap for my clients is that many people don't realize that when you are living with 00:41:12.713 --> 00:41:17.982 - dementia, as the disease progresses, there is a lot of visual processing loss. 00:41:18.562 --> 00:41:25.301 - So not that your eyes are changing, but that your brain's ability to process that information changes 00:41:25.301 --> 00:41:31.907 - greatly. And so a lot of the things that you would recommend potentially for people with low vision 00:41:31.907 --> 00:41:38.844 - because of their physical eye and those pathways would work for these folks too. So I'm trying to listen 00:41:38.844 --> 00:41:45.054 - for good solutions as well. Thank you. I think that's a great example of the curb cut effect. 00:41:45.186 --> 00:41:54.056 - Something designed for one group of people winds up being helpful to so many other groups of people. 00:41:54.056 --> 00:42:03.453 - So I think, I didn't want to be the next voice after my own voice. So I think my specialty being assistive 00:42:03.453 --> 00:42:12.411 - technology, I do home modification work, but assistive technology ranges from very, very low tech. We 00:42:12.411 --> 00:42:14.782 - call it low tech, no tech. 00:42:15.458 --> 00:42:22.333 - all the way to high tech. And low tech solutions are really great options for folks who have either 00:42:22.333 --> 00:42:29.415 - brain injuries or dementia. I have a lot of folks who have learning disabilities and that doesn't mean 00:42:29.415 --> 00:42:36.291 - that they can't go to college, right? So there's all kinds of solutions for all kinds of people and 00:42:36.291 --> 00:42:43.166 - it's really connecting with folks who are in a position like I am that know some of those solutions 00:42:43.810 --> 00:42:52.935 - that can be a game changer for those folks. So really simple solution, just as an example, have we all 00:42:52.935 --> 00:43:02.238 - used a hotel key card? Those hotel key cards and how they work and whenever you touch them to your door, 00:43:02.722 --> 00:43:10.537 - that same technology is in your phone. So if you've gone to a hotel now, you can get a key card to your 00:43:10.537 --> 00:43:18.202 - phone, but that can be translated to lots of different operations on your phone and you can use those 00:43:18.202 --> 00:43:25.792 - old hotel key cards as prompts for people with a variety of disabilities. So I've got some folks who 00:43:25.792 --> 00:43:28.798 - have autism or traumatic brain injuries 00:43:29.154 --> 00:43:37.245 - who can tap their phone and it starts a video of the process that they need to be completing. They can 00:43:37.245 --> 00:43:45.336 - tap their phone and it will start an alarm that will be set for 10 minutes, right? So this is how long 00:43:45.336 --> 00:43:54.526 - you have to be able to complete this task. So really simple things if somebody has fine motor difficulties. I used a 00:43:55.394 --> 00:44:03.831 - Anybody seen a tomato gun? I know that sounds really weird. It's a lighting gun. It's a what gun? I 00:44:03.831 --> 00:44:12.437 - call it a tomato gun. It's for tomato plants, and it looks like a big staple gun. It's like 20 bucks, 00:44:12.437 --> 00:44:21.886 - but it puts a twist tie around a trash bag. People use it to put the twist tie around the vine and their stage. 00:44:22.466 --> 00:44:30.050 - I use it for people who don't have fine motor skills and can't tie a trash bag. So they can. So lots 00:44:30.050 --> 00:44:37.558 - of really unique solutions. So I think the overall message would be to just start asking questions. 00:44:37.558 --> 00:44:45.067 - There's got to be something out there. It's not if you can do it, it's how can we do it. And that's 00:44:45.067 --> 00:44:50.398 - usually the mindset that I go into things with. It's not if, it's how. 00:44:57.570 --> 00:45:03.656 - Yeah, kind of playing off of what Haley was saying, technology is great. Again, even an expensive technology 00:45:03.656 --> 00:45:09.295 - is wonderful. Metaglasses can do what they do now, et cetera. But certainly for the blind community, 00:45:09.295 --> 00:45:15.157 - the low tech is also essential to maintain. Knowing how to do things in a low tech way, putting a rubber 00:45:15.157 --> 00:45:20.908 - band on the conditioner so you can distinguish it from the shampoo bottle, it feels the same way. Your 00:45:20.908 --> 00:45:22.974 - technology may go out at some point. 00:45:23.522 --> 00:45:28.584 - Right, so you've got to have some kind of backup that way that you're doing orientation mobility. Yeah, 00:45:28.584 --> 00:45:33.549 - there's GPS. GPS specifically designed for blind people, in fact. Apps that do that. But what if that 00:45:33.549 --> 00:45:38.465 - goes out? You've got to have your orientation mobility skills still honed. You've got to know how to 00:45:38.465 --> 00:45:43.429 - listen for traffic. You've got to know how to find things without that technology. And quite frankly, 00:45:43.429 --> 00:45:48.297 - the low tech solutions can sometimes be quicker. Let's say you've got something from the store. You 00:45:48.297 --> 00:45:53.310 - want to scan and figure out what's what. You can do that scan initially with that technology, but then 00:45:53.602 --> 00:46:01.127 - put a Braille label on it so you can find it a lot more quickly the next time. Instead of having to 00:46:01.127 --> 00:46:08.953 - pull out your phone and rescan it all over again. High tech's great, but low tech sometimes can be even 00:46:08.953 --> 00:46:16.779 - better and sometimes can save you. Awesome. All right, can we pass the microphone this way? And Joseph. 00:46:16.779 --> 00:46:23.326 - I just had one take on an answer that Missy had given earlier on finding other people. 00:46:23.906 --> 00:46:31.034 - That was actually a note that I had written down for someone who's just been told that they're going 00:46:31.034 --> 00:46:38.162 - to have to change the way they approach the world around them. And the answer that I had jotted down 00:46:38.162 --> 00:46:45.361 - in my notes was, don't try to do it alone. That's usually the first instinct a lot of people have, is 00:46:45.361 --> 00:46:52.418 - that they will go through their stages of grief and they will retreat and try to process everything 00:46:52.418 --> 00:46:53.406 - on their own. 00:46:53.986 --> 00:47:02.044 - Have a team, have a plan, and lead your team so that they know your plan. Make sure that your plan is 00:47:02.044 --> 00:47:10.101 - centered on you as a person and not you as your disability. And then in communicating your plan, make 00:47:10.101 --> 00:47:18.238 - sure that the other decision makers around you share the decision making process with you. That's very 00:47:18.238 --> 00:47:23.294 - difficult a lot of times for clinicians and healthcare workers. 00:47:23.490 --> 00:47:29.915 - We want to do what we think is best for you, but also it's best that we step back sometimes and say, 00:47:29.915 --> 00:47:36.595 - what do you want most? And make sure that the decision is shared. There are a couple of things and tools 00:47:36.595 --> 00:47:43.466 - that I brought up here, examples of how to make plans, how to make sure that someone knows when to identify 00:47:43.466 --> 00:47:49.955 - that your baseline has changed or that you're not working at your baseline. So what a good day for me 00:47:49.955 --> 00:47:50.718 - looks like. 00:47:51.202 --> 00:47:57.678 - There's something that we have here in Bloomington that if you're not aware of, I highly recommend called 00:47:57.678 --> 00:48:03.788 - Smart 9-1-1. So go to Smart 9-1-1. It lets you put in any conditions that you have. It lets you put 00:48:03.788 --> 00:48:10.080 - in who's treating those conditions, who your emergency contacts are. You could be in San Francisco and 00:48:10.080 --> 00:48:16.373 - have an emergency and if they're running Smart 9-1-1, it will tell the dispatch all of the information 00:48:16.373 --> 00:48:20.222 - you put in Smart 9-1-1 so they can reach out to get your plan. 00:48:20.642 --> 00:48:26.495 - So put your plan in Smart911. And then the last thing, I only have a couple of examples of it. My NIH 00:48:26.495 --> 00:48:32.349 - team is ordering more of these for people. But if you want a file of life, it is magnetic. It goes on 00:48:32.349 --> 00:48:38.145 - your refrigerator. It has everything that would go in Smart911. But when emergency providers show up 00:48:38.145 --> 00:48:43.941 - at your home, if you have an emergency, they can just take this with them as they go. And it has all 00:48:43.941 --> 00:48:49.278 - of the medications, all of your conditions, all of your physicians, your emergency contacts. 00:48:49.506 --> 00:48:56.273 - everything right here in one file that you can pick up and go. The number of times as a 911 paramedic 00:48:56.273 --> 00:49:03.239 - that I wished my patient, my ambulance had something like this is countless. Because if not, I'm relying 00:49:03.239 --> 00:49:10.537 - on someone that may not be a part of the team, that was a bystander, that doesn't know all of the particulars 00:49:10.537 --> 00:49:17.171 - of the best way to treat you. And that's when mistakes get made sometimes. So that was my piece. My 00:49:17.171 --> 00:49:19.294 - stepmother's independent living 00:49:19.682 --> 00:49:28.483 - or three-stage community place makes everybody put one of those inside the cabinet door under the sink. 00:49:28.483 --> 00:49:37.199 - It's a requirement. You can't live there unless you've done that. It's very cool. All right, questions 00:49:37.199 --> 00:49:46.084 - from the audience. Anything you think people on this panel might have some things to say about? Deborah, 00:49:46.084 --> 00:49:48.030 - I saw your hand first. 00:49:48.930 --> 00:49:54.667 - And we're going to make sure that you announce your name for the people all in the room, too, 00:49:54.667 --> 00:50:01.013 - as you go. Thank you. This is Deborah Mayerson. I'm going to follow up on what Joseph was talking about 00:50:01.013 --> 00:50:07.177 - just with a more specific question. I'm thinking that you might answer it, but certainly others have 00:50:07.177 --> 00:50:13.341 - answered as well, which is focusing on people with intellectual and developmental disabilities. What 00:50:13.341 --> 00:50:17.918 - kind of safety measures would you recommend in terms of households so that 00:50:18.242 --> 00:50:26.392 - that can be addressed in an emergency. I love the file on life, but I figure there's probably more that 00:50:26.392 --> 00:50:34.229 - we get to know about. Thank you. There are more. The thing that popped into my head immediately, if 00:50:34.229 --> 00:50:42.065 - you are the caregiver of somebody who has been diagnosed with an intellectual disability, I've seen 00:50:42.065 --> 00:50:45.278 - a lot of parents that will reach for 911 00:50:45.506 --> 00:50:52.994 - very rapidly because they're working through the process of dealing with a child with autism is understanding 00:50:52.994 --> 00:51:00.346 - baselines, knowing the baseline has changed, and be willing to work with your doctor to update the baseline 00:51:00.346 --> 00:51:07.426 - over time. But within the home, something as simple as color choices inside of a home can overstimulate 00:51:07.426 --> 00:51:14.846 - somebody with an intellectual disability. They process the colors differently, and that can create problems. 00:51:15.010 --> 00:51:22.072 - So that's something to think about as you work through visiting someone else's home and understanding 00:51:22.072 --> 00:51:29.135 - that my child might process the colors within this home differently than other children do. So that's 00:51:29.135 --> 00:51:36.405 - the first thing that I could think of. I would add to that too that we are very fortunate in Bloomington 00:51:36.405 --> 00:51:43.328 - to have community resource officers at our police department. For people living with dementia, this 00:51:43.328 --> 00:51:44.990 - has been a really great 00:51:45.122 --> 00:51:52.567 - addition in our community because the process of having a police presence arrive can be very traumatic 00:51:52.567 --> 00:52:00.228 - and escalating if you are not sure what's happening and are already in distress. These community resource 00:52:00.228 --> 00:52:07.600 - officers have a completely different approach and I have watched them to skillfully deescalate people 00:52:07.600 --> 00:52:13.310 - living with dementia and make sure that they got where they were going safely. 00:52:13.602 --> 00:52:20.947 - I would familiarize yourself with that service if you don't already know about it and know that it's 00:52:20.947 --> 00:52:28.729 - an option rather than going straight to 911. Even though their intentions are good and they have a certain 00:52:28.729 --> 00:52:36.510 - great skill set, it's maybe not the one that would fit in that moment. All right, Casey. Hi, Casey Garino. 00:52:36.510 --> 00:52:41.310 - I was just going to say to expound on something that Joseph said. 00:52:41.410 --> 00:52:47.059 - If you do decide to do the file of life, don't just have one at home. Have one in your bag when you're 00:52:47.059 --> 00:52:52.599 - away from home, because many of us with disabilities, we have emergencies away from home, and we may 00:52:52.599 --> 00:52:58.139 - be taken care of by strangers that don't know us. And so having that allows EMTs or whoever's taking 00:52:58.139 --> 00:53:03.733 - care of you to whip that out real quick, and they know everything about you. That's great advice. And 00:53:03.733 --> 00:53:07.134 - there's also, I'm sure one of our panelists knows about this, 00:53:07.426 --> 00:53:13.977 - There's a feature on the iPhone where you can put your medical information. Can anybody expand upon 00:53:13.977 --> 00:53:20.594 - what that is? Yeah, so I believe you can find it under your health app. Actually, I haven't accessed 00:53:20.594 --> 00:53:27.408 - it in a while, but I believe it's under there. I know there's a lot under there. So yeah, you can enter 00:53:27.408 --> 00:53:34.221 - your basic information. For instance, what height, weight, I believe medications, blood type, and many, 00:53:34.221 --> 00:53:34.942 - many other 00:53:35.074 --> 00:53:40.350 - And basically what happens is I believe if a first responder opens your phone and I think you can tap 00:53:40.350 --> 00:53:45.730 - on, I think it's emergency again, it's been a while, I apologize. Emergency and then I can see all that 00:53:45.730 --> 00:53:51.110 - information right on your lock screen. Now I will provide a bit of precaution for people who use screen 00:53:51.110 --> 00:53:56.438 - readers like I do. When you use a screen reader on the iPhone, it does change the gestures and the way 00:53:56.438 --> 00:53:57.214 - one interacts. 00:53:57.474 --> 00:54:02.413 - with the phone, and I don't know if emergency responders, perhaps someone else can speak to that, have 00:54:02.413 --> 00:54:07.256 - been trained to be able to access that same information with a screen reader running. So that is one 00:54:07.256 --> 00:54:12.435 - precaution. But in general, I think it's really a great thing to have. It's obviously, emergency responders 00:54:12.435 --> 00:54:17.758 - can definitely find that information a lot more quickly, perhaps a week later. Can someone else speak to that? 00:54:22.274 --> 00:54:28.481 - So I now have a new class that we're gonna give to all of the medical emergency responders. No, that's 00:54:28.481 --> 00:54:34.567 - a fantastic point because no, we don't get special training in identifying screen readers and how to 00:54:34.567 --> 00:54:40.231 - change them back to look for your medical information. The one thing I will say, if you carry 00:54:40.231 --> 00:54:46.438 - your information on you, when 911 gets called and it is a real emergency, it's stressful for everyone. 00:54:46.438 --> 00:54:50.174 - Not just the patient, not just the bystander, but for me too. 00:54:50.434 --> 00:54:57.989 - We just get trained on how to process it differently. Find a way to identify something, for me, that 00:54:57.989 --> 00:55:05.618 - tells me that your stuff is on you. I've already talked to my NIH team about getting rubber bracelets 00:55:05.618 --> 00:55:13.322 - that say, I have a file of life, or something like that. Something as simple as, check my iPhone. With 00:55:13.322 --> 00:55:18.558 - a medical symbol on it. Because as a paramedic, I will look for that. 00:55:18.946 --> 00:55:26.193 - But if I don't see anything, a lot of times it's during an emergency to go through someone's bags. But 00:55:26.193 --> 00:55:33.792 - if I know that there's valuable information there, I can tell one of my partners they have a wrist bracelet 00:55:33.792 --> 00:55:41.180 - or a medical bracelet that says they have information. Go find it, please. So you can actually get wrist 00:55:41.180 --> 00:55:48.286 - bracelets that have a QR code insertion. And you can make a QR code and put it in your Google Drive. 00:55:48.386 --> 00:55:56.464 - and have your medical information accessible that way, scannable that way. I typically, whenever I have 00:55:56.464 --> 00:56:04.852 - someone who medical needs are higher, they will put that same QR code on the back of their phone, sometimes 00:56:04.852 --> 00:56:12.542 - in their wallet, wherever they think is going to be most accessible to folks. I've even had people 00:56:12.866 --> 00:56:21.977 - wear them on like expandable lanyards on their pockets or lanyards around their necks just because they, 00:56:21.977 --> 00:56:30.655 - this one in particular person had so many allergies that it was probably going to be needed at some 00:56:30.655 --> 00:56:39.940 - point. Okay. Great advice. All right, we have another question. Carl Crawford. This is a totally different 00:56:39.940 --> 00:56:41.502 - kind of question. 00:56:41.730 --> 00:56:49.314 - I've worked with Area 10 as a volunteer, kind of with money management for about 20 years. And for quite 00:56:49.314 --> 00:56:56.538 - a while, I helped an individual. She's in Section 8 housing, has emotional and all sorts of issues, 00:56:56.538 --> 00:57:03.905 - but maybe not physical issues. And she has a car, and many times it breaks down. And she works at the 00:57:03.905 --> 00:57:10.334 - library, I think about 30 hours a week over in Ellisville, but she lives in Bloomington. 00:57:11.650 --> 00:57:23.782 - Is there anything she can do to get a ride back and forth occasionally? We thought the same thing. I 00:57:23.782 --> 00:57:32.670 - was going to say transportation for accessibility is kind of a nightmare. 00:57:33.634 --> 00:57:39.905 - Okay, so again, there have been some recent issues. I know we discussed them at CCA during our last 00:57:39.905 --> 00:57:46.489 - meeting with some issues with the rural transit. I don't know if anyone's heard of rural transit, right? 00:57:46.489 --> 00:57:53.010 - But basically, as far as I know, you can still get a ride from the Bloomington area to the Ellis, well, 00:57:53.010 --> 00:57:59.406 - I'm sorry, can you get, can you take that back? You can't go out of Bloomington, can you? Well, yeah. 00:57:59.406 --> 00:58:03.294 - Ellisville is now considered an urban area, which is bananas. 00:58:03.394 --> 00:58:11.939 - So funding for rural transit no longer covers Bellensville. So that was true until very, very recently. 00:58:11.939 --> 00:58:20.401 - And it's kind of in transition because BT Access is supposed to be providing that service, but I don't 00:58:20.401 --> 00:58:28.782 - think it's transitioned yet. Does anybody know that piece of the puzzle? Because I won't promise that 00:58:28.782 --> 00:58:33.054 - part. Are there BT Access people here? Do you know? 00:58:33.250 --> 00:58:42.822 - Has BT Access started providing coverage for Ellen's films yet? Not yet. OK. But is it in the works, 00:58:42.822 --> 00:58:52.393 - as far as you know? They are receiving funding for it, so they have to do it. Oh, excellent. I think 00:58:52.393 --> 00:58:58.174 - it's a matter of time. So I just don't think they ever have. 00:58:58.434 --> 00:59:05.417 - When rural, they never have, we talked about this in commission on aging all the time, because transportation 00:59:05.417 --> 00:59:11.829 - is like the regular refrain. They never have provided it because rural transit was already providing 00:59:11.829 --> 00:59:18.304 - it. So they did other areas of coverage, but now that it's considered a non-rural area, rural transit 00:59:18.304 --> 00:59:24.779 - can no longer receive funding for that. So BT Access is supposed to pick up the service that they had 00:59:24.779 --> 00:59:26.366 - initially planned to do, 00:59:26.498 --> 00:59:34.009 - I know that Area 10 is working with BT Access on that, but I don't know where it is in that process. 00:59:34.009 --> 00:59:41.594 - I hope that they pick it up, but I will say that if you want to talk about an accessibility issue for 00:59:41.594 --> 00:59:49.105 - people living with dementia, that BT Access application is a nightmare. It's 16 pages, and I've been 00:59:49.105 --> 00:59:53.790 - told that that is the shortened version that they got down to. 00:59:54.434 --> 01:00:03.655 - And if you have cognitive issues and have trouble following and remembering, it takes a lot of wherewithal, 01:00:03.655 --> 01:00:12.791 - even in the early stages, to actually fill out and access and then plan those trips. Your typical emissive 01:00:12.791 --> 01:00:21.501 - emotion confusion. Fair. I stole your mic. You can keep it. My name is Josh Wolfe. I have heard in my 01:00:21.501 --> 01:00:23.806 - work that rural transit is 01:00:24.194 --> 01:00:30.865 - going to continue running until the end of the calendar year. So there's a little bit of breathing room 01:00:30.865 --> 01:00:37.279 - there. And BT has expanded out of the city on the south side. They go to the Southwest Library now. 01:00:37.279 --> 01:00:43.822 - Thank you. Good to know. And I do know that rural transit will still be operational, just not in that 01:00:43.822 --> 01:00:50.428 - area. So you can take rural transit from here to Lawrence County or from here to Morgan County, things 01:00:50.428 --> 01:00:51.134 - like that. 01:00:54.018 --> 01:01:01.743 - This is very, very hearsay. Oh, my name is Tori. I know someone who works with PHA, who said that he 01:01:01.743 --> 01:01:09.392 - does not have a hard timeline for it, but estimated that it would take about three to four years to 01:01:09.392 --> 01:01:17.041 - get BT access out to Elksville. So it's like a two-year gap. It is going, and rural transit was not 01:01:17.041 --> 01:01:23.390 - reliable beforehand. So again, hearsay, he does not work with BT Transit, but he's 01:01:23.842 --> 01:01:30.693 - Just from his discussions with his coworkers, he said it's going to take a while. We'll definitely bring 01:01:30.693 --> 01:01:37.217 - this up at the next CCA meeting when we have a low-tem transit who comes every month. So we'll have 01:01:37.217 --> 01:01:42.110 - somebody there who can speak to this more directly. Great. More questions? 01:01:57.890 --> 01:02:05.129 - holding it backwards, right? This is Deborah again. I'm gonna ask one systemic question to the extent 01:02:05.129 --> 01:02:12.367 - that you may have insights into it. Working with state agencies, just because some of the hacks, many 01:02:12.367 --> 01:02:19.677 - of the hacks which are great are more kind of adaptive, right, for specific physical environments. And 01:02:19.677 --> 01:02:27.838 - I'm just opening up a question, because I'm again in a position where I need to deal with state agencies and their 01:02:28.194 --> 01:02:40.984 - vendors on a regular basis. And it can be rocky. And I'm just interested in your insights, perspectives 01:02:40.984 --> 01:02:53.406 - on hacks on dealing with agencies and their vendors. Press zero in the phone tree. That's all I got. 01:02:55.298 --> 01:03:02.783 - So in doing assistive technology and home modifications, I work with vocational rehabilitation a lot. 01:03:02.783 --> 01:03:10.634 - So vocational rehabilitation is a state and federally funded agency that the goal is to provide assistance 01:03:10.634 --> 01:03:18.266 - to help folks get into a vocation, back to work, or help them to be able to continue in their work with 01:03:18.266 --> 01:03:21.054 - possibly a newly acquired disability. 01:03:21.218 --> 01:03:28.120 - I would say that anybody who goes in the door to vocational rehabilitation should be able to access 01:03:28.120 --> 01:03:35.229 - services as long as they meet the criteria, which is they have a disability and they have a work goal, 01:03:35.229 --> 01:03:42.476 - and vocational rehabilitation has at least one service that they can offer them. From there, they should 01:03:42.476 --> 01:03:50.206 - walk you through the process. But if you're looking for folks who may not have a job goal in mind, then there's 01:03:50.498 --> 01:03:57.868 - not a ton of funding out there for them. But if they do have a job goal in mind, voc rehab is a really 01:03:57.868 --> 01:04:05.452 - great option because then they can run into vendors like me. Or they'll get lists upon lists of different 01:04:05.452 --> 01:04:13.180 - vendors for different activities. So assistive technology, there's a list. There's a list for job coaching. 01:04:13.180 --> 01:04:20.478 - There's a list for home modifications. There's a list for drivers training. And then I would say that 01:04:21.346 --> 01:04:28.976 - Talking to the vendors who are working within the agency can also be really helpful because if you are 01:04:28.976 --> 01:04:36.977 - in the system and needing some questions answered, then I can kind of talk to the vocational rehabilitation 01:04:36.977 --> 01:04:43.422 - counselor for you to be able to help with that process because I speak their language. 01:04:50.146 --> 01:04:56.461 - Since I did so well on my first question, I will drag in. Do you know a place, you know, she doesn't 01:04:56.461 --> 01:05:02.713 - have much money, obviously, being in Section 8 housing, et cetera. She does work at the library, so 01:05:02.713 --> 01:05:09.465 - she doesn't really qualify for much else, even though it's probably 30 hours a week, $15 an hour, something 01:05:09.465 --> 01:05:15.717 - like that. So her money goes fast with rent and everything else. She has a car that always seems to 01:05:15.717 --> 01:05:20.094 - break down, and it costs a lot of money to replace a 20-year-old car. 01:05:21.474 --> 01:05:30.086 - Are there places where she could put her name in and might get her a car in the future with not a lot 01:05:30.086 --> 01:05:37.854 - of money? I don't necessarily know about a place that a cheap car can be acquired. However, 01:05:38.402 --> 01:05:45.697 - If she is in need of car repair, Hoosier Hills Career Center has a program in which students are learning 01:05:45.697 --> 01:05:52.924 - to work on cars, and they do take people's cars and repair them for relatively cheap, because it's being 01:05:52.924 --> 01:05:59.806 - used as a teaching tool. So that is one thing I think in this community we don't know enough about. 01:05:59.806 --> 01:06:04.830 - Great suggestion. Haley said she thinks Ivy Tech, too. I think Ivy Tech. 01:06:10.978 --> 01:06:24.894 - Any last question here? Jamie, in your experience, just anyone, jobs for people with disabilities in 01:06:24.894 --> 01:06:39.774 - general, is there like a job that not just a working McDonald's or like a low-end job, but a high-rate job? 01:06:40.514 --> 01:06:56.942 - has benefits and all that? Is it successful more than others? I have a couple thoughts. This is Leslie. 01:06:56.942 --> 01:07:08.158 - I'm thinking about people who work online and are good with computers. 01:07:09.698 --> 01:07:21.348 - leaving the house, going on site to a job isn't necessary. But I'm thinking very specifically about 01:07:21.348 --> 01:07:33.581 - all the work I see, all the jobs I see right now in terms of web accessibility and document remediation. 01:07:33.581 --> 01:07:35.678 - So if somebody is 01:07:36.098 --> 01:07:46.777 - You know, if somebody knows how to design for the website, for websites, and wants to spend some time 01:07:46.777 --> 01:07:57.666 - understanding what makes a website accessible, boy, are there jobs out there. That's my thought. Haley, 01:07:57.666 --> 01:08:00.702 - so I think that I work with, 01:08:00.834 --> 01:08:08.232 - lots of different folks, lots of different disabilities, and I don't think that there's any one for 01:08:08.232 --> 01:08:15.778 - a particular group of people. I think it depends, because everyone is so different and so individual, 01:08:15.778 --> 01:08:23.250 - that it really depends on your strengths, but also some of your barriers that may be in place or the 01:08:23.250 --> 01:08:24.286 - ways in which 01:08:24.674 --> 01:08:34.484 - You can work with assistive tech to be able to mitigate some of those barriers, but I don't think that 01:08:34.484 --> 01:08:44.389 - there's any one particular job that fits, you know, folks with a particular group, any particular group 01:08:44.389 --> 01:08:49.342 - best. I do think web accessibility is really great. 01:08:49.474 --> 01:08:57.080 - If you do have interest in that, I'd be happy to talk to anybody about that because I do work with folks 01:08:57.080 --> 01:09:04.325 - who go through web accessibility. But yeah, so I don't think that there's any one particular job. I 01:09:04.325 --> 01:09:11.786 - think it's thinking about your strengths first and looking at what is needed to do particular jobs and 01:09:11.786 --> 01:09:16.350 - making sure that your strengths and your needs in a job match. 01:09:20.898 --> 01:09:27.250 - Yeah, I mean, as far from the blindness perspective, I mean, there are still, to some extent, what you 01:09:27.250 --> 01:09:33.663 - might call blind stereotypical or blind jobs, quote unquote. But a lot of times in our community, those 01:09:33.663 --> 01:09:39.892 - kinds of jobs are for good or for ill looked down on because they are so stereotypically blind, like 01:09:39.892 --> 01:09:46.367 - the undertuning and things like this. But the goal of certainly my organization, the National Federation 01:09:46.367 --> 01:09:47.230 - of the Blind, 01:09:47.362 --> 01:09:53.497 - is to make sure that all jobs are accessible, or at least as many as we can get are accessible to people 01:09:53.497 --> 01:09:59.398 - like me and like us as blind people. And I think with appropriate modifications, pretty much any job 01:09:59.398 --> 01:10:05.299 - can be made accessible to many, many people with different disabilities. I mean, there are and there 01:10:05.299 --> 01:10:11.434 - have been, even as early as the 1800s, blind doctors. There are blind lawyers. There are currently blind 01:10:11.434 --> 01:10:16.926 - nurses out there. I've heard of a couple, maybe three blind farmers, blind mountain climbers. 01:10:17.122 --> 01:10:25.006 - I mean, going to that other extreme. So I mean, again, it's really, I don't think it's about the disability 01:10:25.006 --> 01:10:32.599 - per se. It's about the accommodations that are made around it. I would say briefly, don't underestimate 01:10:32.599 --> 01:10:40.264 - the expertise that you develop in navigating the world with a disability. It's an expertise that I don't 01:10:40.264 --> 01:10:45.374 - have. Everything I've learned that I've talked about today came to me 01:10:45.538 --> 01:10:52.696 - through someone that identified as having a disability. I had to learn from them and how they navigated 01:10:52.696 --> 01:10:59.784 - the world for tips and tricks that I could share with others. So that is a very valuable resource that 01:10:59.784 --> 01:11:06.873 - others may need. So don't discount the fact that that expertise is very valuable as you look for jobs, 01:11:06.873 --> 01:11:11.966 - because it's something that people tend to overlook from an ableist bias. 01:11:13.442 --> 01:11:18.974 - All right, wow, this is an incredible panel. First of all, it's amazing.