Episode 82: BONUS: “Life After Olmstead” World Premiere

You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy and all things disability. The views and opinions expressed in this podcast are those of the hosts and guests and do not necessarily reflect the official policy or position of the center for Accessible Living. Any content provided by our guests is their opinion and is not intended to malign any group, organization, company or individual.

Hi everyone. Welcome to Demand and Disrupt. This is Kimberly Parsley. Hope you're having a great summer. I am taking a little time off, but don't worry, I'm bringing you something very special today. Our roving reporter Keith Hosie was at the world premiere of Life After Olmstead, a film put together by the Independence Seekers Project. And and Amanda Stull. We've had her on this podcast before, so you all will know of her and she does a great job over there at Independent Seekers Project. And Life After Olmstead is a very important documentary film about disabled people living in community. And there's a link to that to the Independent Seekers Project website where you can find out more about the film that's in the show notes. But what you're going to be hearing on this episode is Keith led a panel discussion after the world premiere of the film and he does a great job with that. And so you're going to get to hear that panel discussion, very important things said. So give it a listen and I hope you enjoy it. Have a great summer, guys. I'll be back in your feed soon.

Hello Demand and Disrupt listeners. This is roving reporter Keith Hosey checking in from the global premiere of Life After Olmstead, a bold new documentary that challenges the status quo, sparks hard for conversations, and redefines what freedom really looks like. Before we get into the questions, I'd just like to acknowledge that this movie had a mention of the Disability Rag, or Ragged, a groundbreaking disability rights periodical. For over 25 years, it was considered one of the most important publications of the disability rights movement, and it's become a national periodical of the disability movement. It addressed the disability community's concerns and both personal and public issues. When ADAPT started a national activist effort to change public transit policy, the rag provided continuing coverage of the activists and the issue. It's Kentucky Proud, right? A little piece of history that we can hold tight. It's also owned by the Advocado Press, who's the publisher of Demand and Disrupt. So I just want to mention, as we saw in the documentary, Medicaid wait lists are real, right? Kentucky currently has significant wait lists for home and community based services waivers, including the HCB Michelle P SCL waivers. With nearly 17,000 people currently on a wait list for home and community based services, the need is real and the impact of these programs is life changing. The Michelle P. Waiver has the longest list with over 9,000 individuals. According to the Cabinet for Health and Family Services, the average cost per individual on Medicaid waiver is just under $103,000 a year, while someone in an ICF costs just above $529,000 a year. To quote Jim Morrison, that's five to one, baby. One to five panel. Often politicians talk about cost, Medicaid cost when they talk about cutting Medicaid. But as I just mentioned, the cost savings are real. When we're out in the community instead of institutionalized. It's a win, win, win. People with disabilities win, the taxpayer wins and the community wins because we're in it. Can you all talk a little bit about what Amanda said in the beginning of the documentary? It's easier to make people compliant than to figure out what they want.

Okay, so let's talk about cost. I have recently written a letter to the Republican backed Senate about these costs. And the one thing that I do not understand, and I don't know if anybody can tell me, is I have put in 38 years worth of Medicaid contributions my own self. So I do not understand this need to cut Medicaid by $1.2 trillion in funds and government matching. I am dismayed. It's easy to forget us and it's easy to silence us. Well, it hasn't been easy to silence us. I have a big mouth. So you know, I will keep talking until I'm dead.

I'm not bringing. I got it. I'll figure this out. The reason I said that I believe was because there's a survey that goes out for people with developmental disabilities around the country. National Core Indicators Survey. And in the survey people surveyed in Kentucky, 70% of the people surveyed in Kentucky were under state guardianship, which means they don't have any rights, very little rights. They have their bill of Rights. There were right to support free speech. But compared to the national average, like in 30%. And so we're like, we have really high levels of guardianship in the people with developmental and intellectual disabilities. So that's why I said what I said when it came to that. And I said, but if you look at how the world is, I think they want to make everyone compliant in our world, not just people with disabilities. Because if they really wanted to figure out what we want in life, we would have to change a lot of things around our system. So I think it's bigger than this disability question too.

So I'm going to read from Corey and he says, I think this is very true and this is why we have learned to stand up and advocate for us and our other differently abled brothers and sisters at a certain time in our lives. I'm sure most of us were yes people. Rather it was to make things easier for our families or caregivers or just to be accepted. I know I was one of those. But sometime in high school I decided to live my life for me and had to do what would make me happy and what was in my best interest. This is our life to live.

Do you want to say something?

We're always going to live at life. But you know, there are tough trials and tribulations. We all want to be treated as equal. We all want to be together. We all, we all deserve our need. The ones.

Thank you. Thank you panel. So Kentucky is lucky because along with Medicaid, we also have some other avenues for services. We have Heart supported Living and personal Care attendant program. Both came about through advocacy and were designed by advocates and used to be very flexible. But over the years the Commonwealth has made them much more Medicaid. Like would you say people on the home and community based waivers as well as HSL and PCAP are institutionalized by the rules. And can you talk about how the state controls your life and who wants to be first on that one?

Give me that first

jump on it.

Okay, so everybody give me a minute because for me this is a bit long. First of all, 138% over the poverty line is not fair at all. It does not allow us to grow from our where we are. I cannot go to college right now and I've been wanting to go back to college for some time, but I have to do it through special rules and you know, have to have my guardianship shift around a little bit, which I won't do. It's kind of like when they asked me do I need a brace? I said no. Another thing is if I meet somebody who I fall in love with and am in deep with, I will never be able to marry them. I know at least one person here that is having this problem up front in real time and it's not fair. It is not fair to have somebody say you cannot get married. I faced it in the 80s with my mother when she remarried with my stepfather who is black. I face it now with both trans and disabled people. And it really raises my hackles a lot to have to go through those fights again. But don't worry, I will.

I think the one thing for me is because I'm on the. I was on the Michelle P. Waiver and that was 40 hours a week. But if you need seven days of care, that's five hours a day. And I don't know. And so every day for like five years, I would have to have accidents on myself because there wasn't anyone to take care of me in the way that I deserved. And I should have sued the state right then for neglect, but I didn't. And now I'm on the ACB waiver, which I get 10 hours a day, which is a whole lot better. But it's always that fear that the state is going to take it away with, take it away from you. And you have no, really no control over it. And that's why groups like ISP and people like yourself are so important. Because all together we have a. We do have a bigger voice and we just, we can't live our lives the way we want. I mean, the income limits are ridiculous. Like I can't get married legally to my partner. So that just sucks. And it should be easy because we didn't ask for this, but this is our life and it does feel like an outdoor prison sometimes. So yes,

okay, he says. I would in no way say that HCBS and institutionalization are the same thing. In fact, I think it's dangerous to conflate the two, especially in today's environment. HCBs help the differently abled stay at home with our friends and family. They allow us to be part of the community and contribute both economically and socially. Plus, people tend to be safer and healthier if they can stay in our communities. On the other hand, people who are institutionalized lose out on those benefits. And I think the reason I think it's dangerous is because I see a movement towards re. Institutionalization. Institutions also deprive individuals of their autonomy, both financial and, and social. And he added, you're right, the top line numbers are 1 to 5. But that's before you take into account that we are employers and we contribute to our economy. So it might really be one to six.

Yeah. Thank you, Corey. Those were all fantastic points. Do you want to say something?

And I've always said I wanted, I always said that I wanted to be married. And I think it's not fair for other people to be married. And we can't get, we can get, we can't get married because our benefits doesn't matter. The matter is love. Let us complain and you show love for one another, not shut them out of their life.

Thank you all. Thank you all. And I, I, Corey, I completely agree that the trend right now is for reinstitutionalization.

See that too.

So I appreciate that perspective. I, I think, yeah.

But I also think you're talking to the first, you're also talking to the first generation of disabled people that lived under the, lived under the ada. So we, like, we do have a different perspective than our elders. Yeah, do.

Okay, well, we've already kind of dipped our toes into it. Let's talk a little bit about the marriage disincentive or penalty. And I, I use those words deliberately out of respect for our LGBTQIA community plus community. Marriage equality for that community was actual illegal to become married for our community. It's, it's a financial penalty and oftentimes a service penalty. So if, if you don't like what I just said, you can email us hate mailemandedisrupt.gmail.com but this is the tip of the iceberg of basically forced poverty, and several of you have already mentioned it. But when you receive services as a disabled person, you really, you can't become too successful because then there's the threat of those services coming away. Can you all talk a little bit about that aspect? And does anyone utilize an able or stable account? Does anyone want to go first? We might as well keep our rhythm.

Okay, so you'll have to forgive me, I didn't understand some of the questions. So let me see here. I have a 401k already set up because before I was disabled, I worked 18 years at a company that I put my savings into. I can't touch any of it right now because it would put me over my $2,000 a year, $2,000 a month level of income. And I find it kind of silly and insulting that people want to start making things like co payments for Medicaid. Hey, heh heh. Because they don't want the tax burden, the burden to go on the taxpayers. What they keep forgetting when they do things like that is that we are the taxpayers. I am incest by the politicians who have decided that we are second or third class citizens, which we are not. And when I'm talking about us, I'm also talking about the pride movement as well. We are not second class citizens, no matter how small of a box you want to put us in. But as for the disincentive I have made a promise to myself right here, right now, that if I ever lose my Medicaid, I'm running four state senate because I got nothing better else to do.

I'm just gonna run for state senate and see what they're gonna say.

I'll vote for you.

I forgot the question, but I think I do use an able account, but it only helps with your assets. So you don't have any assets because you can't make any money, then it doesn't really help. There are some tricks that you can use, but. And I, you know, I might have used a few of them, but. But it still doesn't help. Older people that become disabled, they always like to split us up. And so we never get the collective voice to change any of this shit, you know?

Yeah.

You know, it's an economic movement and a disability movement altogether. And we have to support the workers that help us to get better pay as well, because, you know, they deserve good working conditions because if they get better working conditions, we get better lives in return. So. I don't know if I answered your question, but you did.

It was great.

Yeah.

I think also to your point about getting our workers paid better. Arthur Campbell, many of us know, has always said that the state pays his home care workers less than garbage men. And that's exactly how he feels like the state looks at people with disabilities.

Yeah.

Do you wanna.

It shouldn't be like that because we are people as well. We need to stop being like we're in prison when we're really mad. We need to start. We need people to realize that we are people too. We need the ones too. It's sad how the world has treated us because we feel like we're in jail and that that shouldn't be how life is. And that's my philosophy on it. And I really. I really fight for people who want to be with their loved ones, like Amanda. I really think we should have the right to be with our loved ones. I think we shouldn't be sheltered. But they look at us like we need to be. They're scared and they're scared for us to have sex. And it's not. It's not all about. It's not all about love. It's all about the feeling. And did you show towards that person?

Yeah.

Yeah.

Thank you. I used to have a boss who was on the board of a facility in Indiana, and the board had a problem that it was an intellectual disability facility and the individuals were going out in the woods and having sex and they were trying to figure out how they could stop this. And my boss's solution was, why don't you just let them do it in the facility then?

So Corey says, these are two of the biggest issues I've been working on for years. Like so many issues, they have many levels talk. I mean, take the marriage penalty, for example. Based on the severity of your diagnosis, society may deem you unworthy for a relationship or love and could not ever imagine someone wanting to marry someone like me. So why would society feel the need to fix this injustice that goes back to the 1930s and be the same token, people on a waiver or SSDI can't really work a paying job for fear of losing our benefits. Thus, a large number of the differently abled will always be stuck in poverty. Even those of us that could work couldn't afford to because we might need our aid to get us up in the morning to get ready for work. And the same might be true after work, but we would take make too much and lose our waivers to pay for our aids. Your classic catch 22. In our last budget, we got 2,000 slots, but in this year's budget, we're only getting 450 slots and approximately 230 of them have to be reserved for emergencies.

I'm going to skip around a little bit on the questions I sent you.

You're fine.

Because I want to make sure we get to some of these. We have great responses by everyone. Many disabled people don't associate with the word pride. I absolutely do. And in the movie you mention a pride event in. In 2019 before COVID disability Pride event. Can you all talk about the concept of disability pride and why we need it? Alex, It's not mandatory to answer.

You don't have to. You can say no. I. Pride has always like. The idea of disability pride has like, been a part of my, like, learning of myself and everything. I first learned that from like Eli Claire's book about queerness and disability. And I've in my work at fairness and pride means like no shame in who you are. And even I've been disabled my whole life. But there was a lot of shame when I was growing up and not until I was an adult did I say, like, I'm proud of being disabled person. And that's why I use that term and more like around the culture of disability, because in having a culture of being disabled, I think is really important. And so that's why we did the disability Pride event in 2019. We may bring it back again. I don't know, so. So we'll see. And just, I think, yeah, that's. That's all I wanted to see there.

Most of my friends are a part of the pride. A lot of my friends are disabled as well. But all I have to say about that is we are all human beings, the same people. The same blood that runs through me, runs through every one of you. The same life and death we face, we face together.

Yes.

And the same. Struggles that we have to go through is surprisingly what a lot of us have to go through. I'm sorry if that didn't make any sense, but that's good.

Yes, that is true. We are people. We need to be known as people. We don't need to be known as somebody in a wheelchair. We need to be known that our name. Our mother gave us our name for a reason. Our dad gave us our name for a reason. So we need to use our name. We need to stop being called disability people because we have a name. My name is Heather and I'm very proud of that name.

I'm not the best one to ask about this because I do have pride in myself, but I have a problem saying I have pride in my diagnosis. I guess I would feel like I'm saying I have pride in the mistake that caused my diagnosis. I might feel different if it was genetics or heredity or was part of a differently abled group with their own subculture, like people who are blind or the people who are deaf. Even though I don't feel it myself, I want everyone to feel pride in themselves. And if they have pride in their disability, the more power to them.

Right on. You think? One more question.

Yeah.

Okay.

So sorry. This will be our last question. In the documentary, Alex says, as a class, disabled is sometimes seen as not amongst the normal human beings. Adapt is nationally rolling out the slogan disabled, not disposable right now. And I've met some amazing individuals with disabilities over my years. How do we hold space and create disabled joy? Other than coming to documentary grand world premieres, how do we hold space and create disabled joy in the current political atmosphere? As Corey said, this anti DEI stuff.

Okay, so how do we make space for somebody? Well, if you got enough room to scoot over just a little bit, you let them in. But you got to keep in mind not everybody can talk and have the ability to communicate what they want. That does not make them any less able to come to the table and talk because there are a lot of people who have problems speaking their mind or a little slow on that. And they still have a lot to say if you give them a chance. We open up our hearts and we open up our minds to those around us. It's actually quite simple to do. And I find that when our backs are against the wall, you can actually see who your friends are.

So Corey says society tries to hold us down at every step. They try to infantilize us. For most of my life, I felt like half a person. We have to stand up and demand our humanity. We have to fight just for the most basic rights to live. But we need to remember, just like everyone else, we deserve to live our lives the way we see fitness. We have the right to work, to love, and have a family. When I talk to lawmakers, I always remind, I always leave them with a sobering reminder. We are the only minority group that anyone can join at any time. More often than not, we leave them wide eyed and mouthed on the floor.

There you go.

I mean, I think Alex was right when we have to do it with open hearts and, and just keep, just keep swimming through the chaos with, trying to, trying to make sense of how to support our community. And that's one of the main reasons. I was the co founder of isp was because there wasn't any community that I felt like welcomed me as a younger activist. And when I started this a while ago, and now I'm, I'm, now ISP is starting next year, we're gonna go into the schools and start mentoring younger people. So we get, we get. I give someone my work when I'm ready to give them my work and they're ready to take it on, is that we don't lose time. Like, I feel like we lost some time and we're getting it back and teaching the culture of disability and teaching people that it's okay to be who they are and that the world needs to change and you don't need to change. It's the world that needs to change and that we can do this all together. And one of our founding members always told me that our number one value is that we love each other and that we're here for each other. So if that's. Yeah, sorry, I dropped my thing.

And so I do actually have one more question. Okay, I, I apologize. One more question just specifically for Amanda. This documentary was part one. What's next for isp?

Well, there will be a part two. I need to find the crew to do it with because Sylvia, who is here, she now lives in Oregon, so she's not here. That's why the we shot it in three in three months with four different separate interviews. So no one talked to each other about their answers? No, but none of these answers were rehearsed or anything. But it was kind of interesting. They all kind of tied in together and I hope we can go talk more into the people in more like the residential homes and the day programs, there's this rule called the five hour rule where people in residential homes can only stay out in the community for up to five hours a day. I don't know really what that comes from, but I really want to explore that in the next documentary and explore the that guardianship question that we talked about and work on policies around that because we have to focus on the most impacted people or the people that have the less power. The the less power and the most to lose if things get worse.

I would just say for those interested in alternatives to guardianship, Kentucky Protection and Advocacy has some great information about supported decision making, so please check that out.

Demand and Disrupt is a production of the Advocado Press. Our executive producers are me, Kimberly Parsley and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Ankin for the use of his song Change. Don't forget to follow or subscribe so you never miss an episode and please consider leaving a review. You can find links to our email and social media in the show notes. Please reach out and let's keep the conversation going. Thanks everyone.

Both know there's a difference We've had our curtain calling this time the writing's on the wall. This war of words we can defend. Two damaged hearts refuse to mend

this

situation's pointless with each and every day it's not a game we need to play. Change we try to make things better Repair and rearrange things Mugs each and every letter spelled out different for us to open up our minds and hearts to change. Disregard for good to set us free

Free

Church there's just no way of knowing if love lives anymore Turn out the light and close the door. We try to make things better Repair and rearrange things Mud each and every letter spelt out the need for us to open up our minds and hearts to change

Church Church.