By: Beth Collins
The following text is a transcription of this podcast.
Welcome to disability dialog the podcast I'm Beth Collins Community facilitator for the Ability Center who is exploring what it will take for the Toledo community to become known as the most disability friendly community in the country. Today. We're talking with Ash Lemon, the associate director for the Ability Center. Welcome Ash. and Katie Hunt Thomas disability rights attorney for the Ability Center. Thank you both. Thank you Katie. Thank you. We are talking with Ash and Katie about inclusive neighborhoods for people with disabilities. Katie wrote a workbook for. Communities how to create inclusive neighborhoods.
[00:00:31] And the ability Center published it just a couple years ago. Yes. And so I'm going to turn this conversation over to Katie—Inclusive neighborhoods for people with disabilities is really setting out the disability rights Vision. That was first put together by the Americans with Disabilities Act of what an inclusive community would look like and what sort of policy Solutions might be out there to help create it.
[00:01:08] So the book is set up in three parts and we're focusing mostly on the first part which talks about the passage of the Americans with Disabilities Act the Supreme Court decision of Olmstead V LC. And then the way that relates to inclusive neighborhoods.
[00:01:29] So the Americans with Disabilities Act was passed in 1990. We usually have to tell people, you know, it wasn't an act of Charity. It was something that was hard fought. By people with disabilities organizing protesting collecting stories contacting legislators, really people were inspired by the civil rights movement and felt like they had been left out of it a little bit and so they passed the Americans with Disabilities Act.
[00:02:06] It really sets up a way to create Society so that people with disabilities can live independently in the community, you know, the purpose of the Ada is community integration. And that had to happen because it wasn't happening.
[00:02:31] People with disabilities often had to live in large congregate care settings. Sorry that's a little Technical and often didn't leave. So even though a lot of these places were set up as being something transitional or educational.
[00:03:02] A lot of people with disabilities went into large institutions and then would stay there the rest of their even if they didn't need to. Even if they didn't need to because the community couldn't support them. Right? So the Ada was passed recognizing that what kept people in institutions rather than in the community where societal barriers and it set itself up to get rid of those societal barriers and allow people to live independently.
[00:03:36] Moving forward I think obviously we could unpack a lot with that. Right, but the next thing that really set the groundwork for a disability rights and a vision of an accessible Society was a Supreme Court decision in 1999 called Olmstead V. LC. Usually it's just referred to as the Olmstead decision or people.
[00:04:01] Because it's become kind of a household name and Disability Rights. Just call it Olmstead. Yes, and with the Olmstead decision found was that unjustified isolation by the state of people with disabilities is discrimination under the Ada and that states have a duty to provide services in the most integrated setting appropriate to people's needs.
[00:04:29] So Ash and I want to talk a little bit about the story behind Olmstead. I don't know if you want to go into that a little bit - a little bit behind the story of Olmstead. There was a lady named Lois Curtis who was a person who was living in an institution and she and one of her roommates had decided that they would like to live in the community.
[00:04:56] And so that's kind of what led into the court case and it was in Georgia. Is that correct? And that's how the name of Olmstead came about? Yeah Olmsted was the head of the health and human services so the case always have a story behind the names so in Ohio we've called it Home Choice since about 2008. The Ability Center has actually helped transition over 850 people out of nursing facilities or any Intermediate Care Facilities or developmental centers since 2008. Wow, it's really helped people become. More part of a community rather than being isolated and lonely and in situations that are frankly unnecessary being put in Situation's where they have to be told when they have to get up when they have to eat and you know, if you can live in the community and have the supports necessary.
[00:06:07] It makes a tremendous difference in your quality of life. And so Statewide Ohio's kind of lead and I think next to Texas nationally where they've transitioned over 13,000 people out of Institutions back into their own home back into their own communities.
[00:06:28] yeah, and there's also advantages in savings. There's Medicaid savings. Typically, I believe it costs 60 to 80 thousand dollars to have someone living in an institution that same person with the proper supports and services living in the community. It's going to cost maybe around 30 to $40,000. So it's a tremendous Medicaid savings Beyond being a great benefit to the people who want to live in the community.
[00:07:01] So it is possible. It's happening. We're integrating what else is needed? Well, so it's happening in Ohio and it's happening Nationwide. I think the 13,000 number is pretty incredible for Ohio. Right? And we know that as of 2015 States had transitioned over 52,000 people Nationwide out of Institutions and.
[00:07:30] When surveyed about the rate of enrollment in 2016 21 states expected that the rate of enrollment to increase so. When we approach from the ability centers perspective and we approach social service agencies and decision-makers and we're talking about services that are necessary for people with disabilities.
[00:07:56] We really try to emphasize that the default location for people with disabilities to live now is. the community . People don't always realize that when they're not following along with this, right? And remember that was a decision made by people with disabilities. I know they wanted that they wanted that they fought for it.
[00:08:19] They fought hard for it and you know with the programs have been put in place to assist people to transition. It's always a choice. So every single one of those 13,000 people said I want to move into the community and the challenges to that. Do you want to speak to that now? Yes, so the challenge that we focus on in this booklet is housing.
[00:08:48] There are a number of different challenges physical accessibility of the community getting enough Health Care supports in the community transportation is a challenge, but we focus on housing in this booklet. For most people transitioning out of Institutions, the two things that are big barrier to housing are subsidies and accessibility, right?
[00:09:15] A lot of housing was built pre new guidelines and is inaccessible, and a lot of new housing that is accessible is fair market value and is not affordable to a lot of people, especially if they've just transitioned out of an institution.
[00:09:39] For example our transition coordinators who do the transitioning. The biggest thing that they have to search for is housing because there isn't enough because there isn't enough or is it affordable.
[00:10:00] Based on the Olmstead decision, just to give you a little bit more background on that housing providers that create housing are required to ensure that it's integrated as well. So occasionally we'll see affordable housing being created that is a hundred percent people with disabilities or is segregated.
[00:10:29] And even though some of the housing is very nice it's not in Alliance with the Olmstead decision. People with disabilities are looking for integrated accessible affordable housing. Well, can I ask you caitie or Ash some of the conversations that I'm having are with people who would say integrating their adult child with a disability isn't as simple as just. making it accessible. There are also other needs for that person. So integration isn't just make room for me and make sure there's an elevator or physical accessibility, but I can't actually live completely alone. So anything about that?
[00:11:26] The standard is the most integrated setting appropriate. So you always want to make sure that there are a variety of options when we're talking about accessibility. That's not visit. That's not physical accessibility. We're talking about Healthcare. Right another good subject. You can't really talk about housing with people with disabilities without talking about health care.
[00:11:55] There is definitely intersection there. Yeah, I think for people who don't have physical needs but maybe have an intellectual disability then what is needed are Community Based support. So if you can't live on your own and you want to live with your parents your parents need to be supported if you can't live on your own, but you don't want to live with your parents, maybe you need roommates or personal care aides home health aides. Sometimes rather than a single-family home or your own apartment. maybe group homes due to be available. I think. There do need to be a variety of different choices available. I think for people with intellectual disabilities who want to live on their own but can't live alone.
[00:12:54] They need to have enough Health Care supports available in the community to ensure that they have caregivers and you know where where necessary or wanted the ability to live with a group. That's why it's so tough to have just one conversation. Yes, we're going to talk about housing people. We're going to try to talk about housing.
[00:13:19] Yes, but go ahead continue. If I might also say that housing can take different forms. It could be a multi-unit housing complex. It could be single family or it could be like group home and it really kind of depends. Like Katie was saying what level of need there might be for services and individual Choice.
[00:13:44] Yes. So I think the final thing that Ash and I wanted to discuss was a project that we're working on and this does focus on accessibility of single-family housing. So if you think about Toledo, especially a lot of the housing is older housing stock. Yep. It was built before Aging in place before people lived to these great ages where they're more likely to have a disability and perhaps people weren't thinking about housing accessibility.
[00:14:29] It's very difficult to find a home that has an accessible entrance, right? So another portion of the book and something that I have been working on is creating something in ordinance in our area that would require homes to have one accessible entrance. Yeah, just one entrance that everyone can get in and part of the push for these sorts of ordinances is also the ability for people to visit. Sometimes they're called visitability ordinances for that reason. I saw a clever video that was pushing visitability with a Lego child who used a wheelchair trying to get into a birthday party, you know where the they go child just ran into the step, you know unable to go to a friend's birthday party.
[00:15:35] So it is also helpful for people to be able to visit but we see it more as a Universal Design. type push Universal Design has a different connotation. But we see this as something benefiting anyone who purchased the home and gets older and develops a disability anybody who wants to visit anybody who has a child that they're not expecting who may have a disability.
[00:16:07] Rather than having the forethought to think you need a way to get in and out of the home every home would just have one entrance that would be accessible and there's so many benefits to having a single entrance that's accessible. Let alone it's much easier to move furniture in and out of your home right when you don't even have to ramp it.
[00:16:29] It's totally accessible right strollers go in and out of the home much. It's kind of a life cycle of thing. There's been some statistics that 70% of us will incur at least a temporary disability at one point in our lives. I mean, it doesn't disability is one thing especially physical disability doesn't discriminate anyone because can become part of that cohort at any given time.
[00:16:58] We see it every day, unfortunately with accidents or illnesses. Or just natural degenerative state disability happens. It's a natural thing and over the course of time a home will go through at least seven different home owners on average and so it kind of makes sense from a being a smart Builder type perspective to make a homework for someone through that life cycle or for whoever might end up purchasing that home at a later date.
[00:17:31] So there's a lot of benefits there. And what's it like having that conversation with Builders? Why are you laughing? Are they resistant there? So I'm asking because it sounds like a no-brainer, right? Like for Habitat. We have had a lot of luck lately with Maumee Valley Habitat for Humanity.
[00:18:05] We've been working with them over the last year. In fact, they built their first home last year with a zero step entrance and they included some other things like environmental controls that were inaccessible locations, which is really, you know matter of lowering something a few inches, right? The other items that they've done also is wider doorways.
[00:18:32] So instead of putting a 28-inch door 30-inch door and they put 32 inch clear with doors. So what's that going to help? Well, if you're using a stroller or you're using a walker right wheelchair? Crunches it makes it a lot easier to get through the home. Just easier for everyone. It is easier for everyone.
[00:18:57] In fact, if you look at a lot of the new homes you go on the Parade of Homes tour, you'll find that some Builders are doing this without really realizing that's they're already making strides towards its really kind of what the markets asking for. Yeah. I love Anaconda that's accessible. There's no steps right from the garage into the home and you don't realize it until you're walking it and not even needing it.
[00:19:25] You just realize everything's just easier and it doesn't look institutional. It's there. It doesn't need to look institutional never did need to look institutional. All right, and there's some home builders in the the Toledo area who do a great job with this and you would never know that it's a.
[00:19:43] Fairly accessible Universal Design aging-in-place barrier-free, right? What you have is a fairly usable home through the life cycle and for everyone and it just makes a lot more sense to build that way. Visitability seems like a next step. If you can't get Universal Design but visitability as a minimum.
[00:20:06] Yes, so, you know all new apartment complexes that have four more units are supposed to be visitable anyway, but we don't have single family housing that fits that and Lucas county is an aging County. Ohio is an aging State and it's something that's becoming even more necessary just for aging-in-place.. For Community inclusion for everybody. I also think if we're talking about Community integration and people with disabilities being self-sufficient which again is something they fought for and that they just need the protections from the Ada to accomplish home ownership. is a very important part of that especially in our area of the country, right?
[00:21:03] But there's no point in owning a home if you can't get around it and so that one traditional way of Building Wealth is taken away from a lot of people. So, I mean, I do think that it would be a really great thing for our area. And I'm glad that Ash brought up habitat because they really worked hard at creating that Universal Design floor plan and they have a very small budget so we know it can be done and my understanding is it's now their standard moving forward.
[00:21:42] They want all their builds to be Universal Design. That's a coup. Isn't it? They found a lot of the people they were serving had the need and it just fit. The disability dialogue is about how can we make, you know our community the most accessible in the country?
[00:22:08] Yes. The habitat design is something that can be best practices for habitats all over the country. Right? Wecould set the standard for Disability Policy. I love that. Yeah, so could we wrap it up by my asking what suggestions would you have for the community to become more aware? Like what could we do as a community if we're not in a position to change the laws or enforce the laws?
[00:22:41] What would you suggest like just. Help us out. I think that just awareness is the first hurdle. So, you know when we talk about the potential for a Universal Design ordinance locally part of what we're talking about. There are people who currently don't have the connection to disability who don't know what that's like or what's available.
[00:23:18] I think understanding that anybody could get a disability at any time or a family member and realizing that these sorts of things are not something that needs to be fought for just by a minority of the population but really to serve everybody in itself would help our decision makers become more aware and provide and work towards what's needed to make a more accessible community. So I think you know walk around with your eyes open support initiatives to make things more accessible, you know, let people know that that's important to you and that that's really how we change what Northwest Ohio looks.
[00:24:16] I love that so I'm going to say thank you. Ash lemon and Katie Hunt Thomas from the Ability Center for bringing up this awareness to us. And if you want more information about disability dialogue or the Ability Center, you can check us out at disability dialogue.com or on Facebook search disability dialogue.
[00:24:39] Thank you guys so much. Thank you.
Hamilton Lombard, Demographics Researcher UVA