Go to todaysautisticmoment.com for the transcript
Many Autistic Adults need supportive service to help with day to day self-care. During this episode, I will be talking with Sara Swan the Owner and Founder of Looking Forward Life Coaching. Sara and I will talk together about how difficult obtaining such services is in Minnesota and elsewhere. We will reveal the results of the survey through which Autistic Adults told us of their experiences with applying for supports and what they experienced with service providers. --- Support this podcast: https://anchor.fm/2daysautistic/support
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Autistic Adults and Community Based Services
Program Script
April 19, 2021
[You will notice that some words have a strike through font. These are to reflect the new website created in September 2022]
Welcome everyone to Today’s Autistic Moment A Podcast for Autistic Adults by An Autistic Adult. My name is Philip King-Lowe. I am the owner, producer, and host for this podcast, and I am an Autistic Adult. Thank you so much for listening.
This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota: Minnesota’s First Autism Resource. The Autism Society of Minnesota has been serving Minnesota’s Autism Community for the past 50 years. Visit them online at ausm.org.
Go to todaysautisticmoment.com for the transcript
My tee-shirt sale and fundraiser for The Autism Society of Minnesota, ends Saturday, April 24th. Go to todaysautisticmoment.com/store/ right now to purchase a custom-made tee-shirt made of comfortable material and you get to choose the color. I will be donating 15% of all the tee-shirts sold to the Autism Society of Minnesota in May. If you would like to make a simple donation, without purchasing a tee-shirt, click on the button in the store, that reads Donate to AUSM. While at the store, shop for great books by authors such as Temple Grandin, Dr. Theresa Regan, Cynthia Kim, Samuel J. Levine, and Finn V. Gratton who wrote a book entitled Supporting Transgender Autistic Youth and Adults. You will also find a lot of fun fidgets, weighted blankets, and a silicone bracket to help keep the material of face masks off of your skin. Go to the Podcast Episodes in the hamburger menu at the top right corner, click on the plus sign, then go to New Podcast Episodes for upcoming shows, and you can send your email address to subscribe to Today’s Autistic Moment, to receive newly published episodes, podcast news and updates. If you are looking for a program script and/or interview transcript, you can download them with each episode. Transcripts are sponsored by GT Independence. Go to the Episode Index page to listen to formerly published episodes. Please follow Today’s Autistic Moment on Facebook, Twitter, Instagram, and LinkedIn.
Many Autistic Adults require supportive services to assist with tasks such as homemaking, personal support, PCAs, Independent Living Skills Workers, and other supportive services. Other Autistic Adults need childcare support, food assistance, fuel assistance, transportation, medical assistance, vocational rehabilitation services and so forth. The process and the system that is supposed to help Autistic Adults and obtain well-qualified workers and hold them accountable in the State of Minnesota and elsewhere is grossly inadequate. The application processes are too convoluted. Too many Autistics have had inexperienced case managers who have vanished for weeks without explanation or contact from the agencies they work for. Many Autistics have had services that are desperately needed denied without explanation or the professional common courtesy that would be a requirement for anyone else working in customer service. Others have had horrific ordeals with on demand disability transportation drivers being verbally abusive and/or harass Autistic Adults. Things like this just should not be happening. Minnesota is better than this. The United States is better than this.
On this episode of Today’s Autistic Moment, I will be joined by my guest Sara Swan from Looking Forward Life Coaching to chat about the many Autistic Adults who have had such incidences with Community-Based Services. We will reveal some of the results of the survey that was conducted, through which some very courageous Autistic Adults told us about their experiences when they applied to get Community-Based Services. Much of what we discuss here may be triggering for many of you. However, we want your stories to be heard by people who will actually listen. We want to begin a truthful and assertive public conversation that will hopefully bring changes in public policy and accountability to improve our quality of life.
After this commercial break, I will begin my conversation with Sara Swan. Stay tuned.
Today’s Autistic Moment is now a proud member of the National Podcast Association. The National Podcast Association will share new episodes through their social media connections. The information about and stories of Autistic Adults will be heard by a wider audience. Thank you to the National Podcast Association for welcoming Today’s Autistic Moment and the voices of Autistic Adults to their list of members.
Today’s Autistic Moment can be downloaded and heard on Anchor, Spotify, Apple Podcasts, Google Play, Breaker, Castbox, RadioPublic, PocketCasts, and TuneIn.
Philip King-Lowe
Sara, I want to thank you for being on an episode of Today's Autistic Moment. And I want to say I am so thrilled that you are a guest and of course, a great sponsor, to Today's Autistic Moment. And your services are well received by many in the Autistic Community. And so we need to have this conversation about what is happening with community based services for Autistic Adults. This is a subject that has impacted me personally, and many others around me, it has affected them personally. People who have applied for services, such as a PCA or medical assistance, transportation, childcare, vocational rehabilitation services, there are people who have applied and tried to get qualified people, people who are knowledgeable about Autism and Autistic people. And we're just not getting all of that, like we should. And this conversation needs to happen. It needs to happen for Autistic Adults, Autistic people in general. And we need to start having a conversation publicly about how this is going for Autistic Adults. As somebody who has experienced much of the problems, we're having. Everything from applications very difficult to fill out, finding people who can help fill out applications, case managers who simply do not understand Autism or how to communicate, nor do they understand how to get qualified people to work with Autistic people. There are many, many issues we could discuss all day long. But you you own an agency that has life coaches, and you and I have talked in the past that you have accompanied Autistic Adults in these journeys, and I'm sure you have as many stories to share as I do. So, let us begin as I always begin my first question for you. What important information do Autistic Adults and our caregivers need to know about in terms of Autistic Adults and community based services?
Sara Swan
Well, first of all, Philip, thank you so much for this opportunity to just have this conversation with you. Because I do agree 100% that this is not this is not happening. This conversation is not and unfortunately, many people are underserved or not served enough. And yeah, that does not bode well with, with me and my organization. But more importantly, the quality of life that so many of you are facing is is unacceptable. It's completely unacceptable. So we want to come alongside and support and get you to the point that not that we want to do all the work for you, we simply just want to provide that support. So you in turn can advocate and receive what is duly yours.
Philip King-Lowe
Exactly. Exactly. Yep. So um, you know, thank you for all of that. So, in terms of information that we want to share with my listeners, as we as we continue to face these these momentous challenges, um, let's put some facts on the table. And that one of those facts I do believe is that many of the individuals who work for County offices who are supposed to be helpful to Autistic Adults, they are simply not informed and not trained as to how to be helpful to Autistic Adults. Would you agree with that?
Sara Swan
Oh, I, I would completely agree with that, I think that there is a stigma that is being portrayed that. And I've seen it over and over and over again, with many of my clients, that there's the assumption that you don't know how to do things, and you don't know how to function and you don't know how to be independent. And that's far from the truth. And if we continue to have this mentality, that Autistic Adults cannot function, cannot be productive, then the world is missing out on an incredible group of people.
Philip King-Lowe
Totally agree. Yeah. Yeah, this, this, this, I'm gonna say this, this atmosphere of ignorance about Autistic Adults, is indeed a refusal to be aware and to accept Autistic people. There is a mean ableism in this that needs to be mentioned. Because, you know, we are not applying for these services, because we are oh so happy that we must apply to receive them. We are applying for these services, because we really do need them. We know that Autistic Adults, we deal with things like executive functioning, which makes it difficult for us to manage our day to day, self care matters. Everything from homemaking, to preparing meals to, you know, keeping our doctor appointments, you know, scheduled and some taking meds and some needing someone there to simply witness what we're living through, and be able to be on our side. And that's what I think it if you agree with me, that's what community services are really supposed to do.
Sara Swan
Yes, and, and why does it have to be that Autistic Adults have to fight for those types of things? Me, as a neuro-typical, I can access all sorts of things. You know, I could call up a house cleaning service and say, "Hey, I need somebody to come in house clean." You know, of course, of course, I have to provide the monetary kind of things. But in turn, there's that vulnerability, that that the connection, that doesn't quite happen, maybe it'd be a social piece, maybe it'd be an organizational piece, of time management piece, um, in turn, then that's almost seen as a red flag, why some of these services are not made available. And and that's wrong, because in turn, you're being discriminated against.
Philip King-Lowe
Of course we are. And also, the very fact that there are many issues and pieces of information to share, such as we know that not all of this is the fault of the even the County or the organizations. It is an issue of funding, the funding and wages. It is if it is an issue for I mean, how are agencies supposed to hire well trained, well versed persons, when they pay them a wage that can't even guarantee that they can hold on to a competent employee? So let's give them that credit where credit is due that is definitely part of the bigger problem.
Sara Swan
Yeah, I agree. They're their hands are for sure tied in some realm. Yeah. I you know, the, it's sad to say, but our system here in the State of Minnesota is actually better than several other systems across the country. And I do want to acknowledge that and that's that is, that is a plus. That is a plus. I mean, there's you know, other states and I, you know, I don't want to name the state that, you know, would simply take an amazing person like you, Philip and "let's just put him in a group home. And, you know, and yeah, he'll he'll be fine" kind of thing." And so I do have to give credit where credit's due, we do have a progressive state, which is wonderful. But I think with that progression, it leads to some barriers that we run into. And and that is unfortunate that a lot of those pieces don't fall into place where they should, and then the person that gets affected the most is the person who needs the services.
Philip King-Lowe
Absolutely. Absolutely. Yeah. And, you know, I have, I have myself experienced, and I have heard of others experiencing the system, in terms of, I went to fill out an application. And I went to ask for help. And the person who was helping me didn't understand, nor did I understand what that person was telling me. And so, um, you know, they were just so overwhelmed by their encounter with case workers, that they just simply walked away. We know that happens. And so, but we, as you know, I did put out this little survey about the experiences of some others who have applied for services and some of the situations that they have reflected upon. And so Sara, um, I think it's best, if you can give a little bit of a synopsis, I suppose, about what you observed. As you were looking through the survey, and the answers that were given, what were some things that really, really jumped out at you?
Sara Swan
Oh, of course, of course. Thank you Philip. And I'm glad, I'm glad you put this out there. These are, this survey asked some of those really tough questions. And and I applaud your responses that you got, because that was, you know, that step that might have been a little bit difficult for your listeners, but I'm so glad that you did get some responses. But when I was looking through this, my heart broke. My heart just broke, because there was sadness, there was frustration, there was even fear. What I heard as some of these responses, and this isn't how someone should live, this is no, this is not how someone should live. And, you know, I, I just really wanted to reach out to each one of these individuals and say, No, there, there is help, there is support. And that's what we can provide. A big piece of what I hear is, and as you know, all too well, and I do too, working with several of our clients, that this system is so overwhelming. Like, the information is it, it's too much, it's too much information. And to try to face that alone, I can't imagine I can't imagine just even be I'd be like, Whoa, this is way too much. And then to see what just was devastating for me to hear that there were people that were being abused by service providers. You know, we we have a really tight ship at Looking Forward Life Coaching. And, you know, we, we focus in on the person and to hear things like saying that they felt that their life was in danger, or that their service provider told them how much they hated the job and was saying things like stupid stuff to spend time with individual it just that devastates me. And, and I know this is true. I know this is true. I have heard it. I have heard it time after time again, with the clients prior to coming to us. And and it's just it breaks my heart and I can understand why someone would want to walk away from that system.
Philip King-Lowe
Absolutely. Yeah. Yeah, I mean, you know, if there is the human element of if you're standing there knocking at a door and nobody's answering or someone's just being rude. You simply give up and you walk away but and and unfortunately, many Autistic Adults wind up walking away from services they really need and suffering in the silence of that, which is really extremely, extremely heart crushing.
Sara Swan
And, Philip, what I have noticed too, is that the main reason why I created this nonprofit was that I was seeing so many times I was I was an educator, I was an educator for over 20 years. And I was seeing so often individuals falling through the cracks, because one of two things, either they weren't so seriously involved that their services coming out of every which way, which is, which is good and needed, for sure. I'm not knocking that. And the second was that these were individuals that weren't ultra, ultra naughty, and had behavior issues, that in turn, what's going to go into a completely other system, which is usually the, the prisons, or whatever that is, and and, and again, those are very much needs based, but I just saw this group of individuals that were falling between the cracks, and that's what may be developed this is because individuals like you Philip and your listeners there isn't that support, and the ability to to set them up for success. Okay?
Philip King-Lowe
Exactly!
Sara Swan
You've got you've got such a convoluted system, and I get I'm not trying to knock it, you know, there's, there's I have several friends that work, you know, within the counties, and they try so so very hard. But it's a one size fits all, and it shouldn't be a one size fits all. Okay? If if the paperwork isn't understanded, okay, let's look at it a different way. How can we how can we? How can we, you know, support people in a better environment?
Commercial break I
Philip King-Lowe
We've already been crossing into my second question, and there's no reason we can't continue with them. But what are the barriers for Autistic Adults of all ages, when it comes to community based services? And, we've already been naming many of them. those barriers are, you know, trained, case managers, over work, case managers, poorly paid case managers. You know, I don't want to name my County because I don't want to be reprimanded by somebody for doing it. But my County is one of the most disorganized Counties I have ever come across. Every time I talk to a different caseworker, I get a different answer that somebody before me did not give me the right information. And then I get the same, I get the same kind of answer from the person after them. And you know, and before I know it, I've got so many versions of this of so many different versions of the same issue, that I wind up having to go through through my political leaders to finally get somebody to sit up and pay attention. And as we already said, that should not be the case. But unfortunately, it is. And so, um, you know, like I said, we can name the barriers all day long, but let's, let's name a few of them, a few more of them. Because we really want to help our, our listeners, the people who are experiencing these things, know, you know, you're not the only ones experiencing this number one. And number two, when we get into the part about advocacy, we're going to say that we are experiencing these horrible experiences, but we are not alone. We do have advocates, and we're gonna we're going to talk about where they you know, how they can advocate how we can advocate. So but for now, you know, a lot of these barriers already have to, we've already said funding. We've said training certification. I had a PCA inform me, that the test given by MDH to become a certified PCA is the kind of test that can be passed by any parent who has ever taken care of a sick child about five to ten years old. Wow! There is nothing in those tests, that even indicates that they are the kinds of people that they could be working for. And I don't know about you, but that is just scary. You know, and so, you know, the questions we have to ask, why aren't, why isn't the state making better, you know, making improvements to the system, what do you think is going on there?
Sara Swan
Well, I think probably the biggest disservice. And I think this is one of the ways that you and I got connected is the fact that The Autism Society in Minnesota has said this. There's so many services and so many things provided up to age 18. And all of a sudden, boom, it completely drops off. And we, we don't even start providing services until at least 16. And it goes way up well into adulthood. But we're one of the few, we're one of the very few that that recognize that. And I think another big element that is is tough, too. And this is a big thing we'd spend a lot of time doing is we bridge the gaps of the silos. There's silos everywhere. Okay, so let's take for it, I'm not picking on you here, Philip, but I'm going to use you for an example. Okay, so you've got you've got a PCA, you might have vocational rehab, you might have, you know, a case manager, and then a financial support manager, okay? So let's just say you have those four silos, and they're supposed to work towards your good, okay? What's going to be the most beneficial for you? What is going to be person centered for you that you truly need? And you get the case manager saying one thing, and the PCA say the third thing, just like you would said, you've gone to so many different case managers, and they gave you a different result. So a big thing we spend, and and I've been on both sides of the table, I, you know, as an educator, I had seen these silos; but I have an uncle that I'm guardian of, and that needs that support. And I've seen all the silos that he has faced that we've had to bridge as his advocates that should not there should not be that breakdown. And that's a big thing that I'd see that's happening is is that silo effect. And how can we bridge it? And that starts, unfortunately, kind of the state, county level is, is those many times those silos are occurring. And who's going to get the result of it? Is, is the people they're supposed to be supporting.
Philip King-Lowe
Totally, totally, totally agreed. Yes. And I agree with that. I can name any number of situations where my case manager has informed me of somebody a homemaker coming to work with me, and him and I have worked out the details of what's going to be needed about what's going to be expected. And then the, the person who comes here has no clue about anything that I said to the case manager, none at all. And I have to go back to that. But you know, I had been, you know, I have often gone back to the case manager, he's told me, he told me, and then somebody in their office said that he didn't. Well, you know, I had I had, you know, I will say, I do have a superb, independent living skills worker and a personal support. And, but there was the time when I had to finally put an email between him and my case manager, because he had been saying to me, I have not heard from your case manager, will you? Will you ask him to contact me? I'm like, Yes, I will. I contact the case manager. And the case manager said that they contacted him. He comes back to me the following week, I have not heard from your case manager, you know, whatever. So finally, I got completely frustrated. And here's the here's an advocacy tip for some of my listeners. If you're in that kind of situation, sit down with an email to both your both your case manager and whoever it is that that's working for you, write an email to both and like, like I did, and I simply said, Look, this is not appropriate for me to be between two professional people who are supposed to be looking out for my services. Okay? So, so will you two please work out communicating with me with each other and leave me out of between you and just work on making sure I get the service I need. So, you know, but, but I, I did that I had to do that. And, you know, um, it's just a fact that, unfortunately, because of how the system is so broken, that Autistic Adults and their caregivers; and I'm sending this message out to my listeners, many of whom are in the same situation, you, you are the best person to advocate for yourself. And unfortunately, because of where we are, you have to do that. Sometimes you just have to. And you know, where we're already saying we're already crossing into, what are some steps that Autistic Adults and our supporters need to take to advocate for our needs? And I'm gonna give you the floor to talk about some, but I wanted to say something that I had to do on two occasions, that I do encourage my listeners to give some thought too. I had a CADI case manager, about a year and a half ago, who suddenly became non-existent. Would not call me. Would not return calls, emails, anything. So finally, after, after about two weeks of that, I sat down at my computer, and I wrote out a letter. I addressed it to the Governor, the Lieutenant Governor, my State Senator, my State Representative, my County Commissioner, my County Human Services Office, I also wrote it to the executive director of the agency that my case manager worked for, and the case manager themselves. I wrote out the one one letter, and that and, and then, but, and I put the names and addresses of each of those persons up above, so that each of them could see, that each of them got the same message from one person. Okay, and so and so, let me just say, I sent that, I put that in the mail on a Monday, I'm sorry, excuse me, on a Saturday. And I got a call as early as Monday morning, apologizing to me that I had that I had been left in the situation, and that they were going to call somebody to do something. And so to my listeners, if you're experiencing something, sometimes you have to be willing to do these things and or getting some people to help you do these things. You must advocate for yourself, Because you are the best person to advocate for yourselves. And however you choose to do that. You must begin there. Where would you take that one, Sara?
Sara Swan
Oh well, first of all, so cool. Good for you. Good for you, Philip. Again, I have to call you my hero. He really is folks. He is my hero. I just love what he's doing.
And and that's just amazing. You know, it. Unfortunately, it's who screams the loudest gets the response. But sometimes you just have to flat out yell, and good, good for you. I mean, there is a reason that these are elected officials, they aren't up on some pedestal they need to be made aware of, and they need to do their job for you. Because Because it's that's why they're in office. More than anything, and I agree with you 100% that you are your best advocate. Yes, we, we advocate for our clients, yes, we provide advocate, advocacy training, and that's such a stuff, but when it gets down to it, you know yourself better than anybody else. Or your caregiver who who has known you all your life does, or maybe your spouse, you know, we lean on those people because of they're going to come beside you and and truly fight what what you need what you need for sure and use your resources. You know, it's it, the theory is it's not what you know, it's who you know, kind of thing. So use those resources, you know, if you've got a friend of a friend of a friend of a friend will talk to that friend and say, Okay, how can we make some changes here and and provide what I need?
Philip King-Lowe
Right. I would imagine that you and many of your staff at Looking Forward LC have had to assist some of your clients to advocate. What are some ways that you have found to be very effective?
Sara Swan
Well, we work with we work with like I said, 16 and up and we have some college age collegiate age individuals. And one of the stigma that falls into it is up until college, young person has the ability to lean on their parents or their caregivers, to advocate for them. But by law, in college, the, the caregivers cannot step in. At that point, even even if they're assigned Guardian. It still needs to go through the student first. But, when you all of a sudden have an advocate in a professional setting, which we are, come into the college setting, or the collegiate setting, whether it be trade schools to you know, Ivy League and say, this person needs these accommodations, these, this person needs this support, all of a sudden, they'll sit up real quick, willing to jump through those hoops. Because there's that assumption, unfortunately, the 18 to 20 to 23 year olds, they're they're trying to scam the system know. No! If they need extra time on a test or if they need something like that, then the good to give it to them? Um, you know, other areas that that just need support with advocacy is, is starting off stuff like Medical Assistance. Just where do we start with that so many times, we'll just sit down with them and go step by step by step. And we talk, we talk a lot about thinking outside the box. Okay, what are our different learning styles? Are we you know, are we very good auditorily? Are we a visual learner? And if our client does much better with the visual than have that right there in front of them, and then have a second copy for our coach, so we can go step by step. If it's an auditory and they just want to hear the questions, we'll just ask the questions, and then transcribe for them. So again, it's it's a different theory of just handing over a form and saying here, good luck.
Philip King-Lowe
Yeah, exactly. Yeah, yeah. Yeah. So, um, so how so? How do you? How do you help some people with things like that, again, talk a little bit about how you how you help? How do you how do you help them self advocate?
Sara Swan
Again, we go within their learning styles, okay? How will they learn that self advocacy, okay? Many times when, when we work through things, it might be repetitive stuff, okay? So, so we get into a situation say, Okay, what worked in the past? Remember, these are the steps. If it's a visual learner, you know, maybe we create note cards, or some sort of visual aid to, to re-encourage that advocacy, will go with them step by step on what they need, but then fade back a bit until they truly feel like they feel comfortable. Or advocating a big a big piece of, what Autistic Adults face is not necessarily the intellectual, it's, it's the social piece. It's the emotional piece. It's the anxiety that sits there. And, and so many times to feel that safety net. That comforting blanket of a coach with you, when you're just doing it all on your own. I can't tell you how many times we might be with one of our clients and they just, we've prepped them, we've talked about it, we're ready. And they just but they want us right there. Can I give an example if you don't mind?
Philip King-Lowe
Yes please. Yes, please.
Swan Swan
Okay, so we had this young man and he wanted so bad to go to tech school to become a welder. Okay? And totally did, which is great. He rocked it out. But he me, he asked me, he says, For orientation, I don't need you to go into orientation for me. But could you just sit out in the lobby? And I said, sure, sure. I could sell the lobby and play Candy Crush, all is good. So please come up periodically and just look. Okay, she's still there. Okay. And I'd be like, questions. No, no, I'm okay. I'm not great. Great. Great. Great. So we go back in, you know, an hour later came back out. You okay? Yeah. All good. And then when we get to the end, that's when you need to fill out some paperwork. And he's like, okay, yeah, yeah, I'd like you to just help guide me through this. And, and it was just simply that that comfort that safety net in case he started to fall. He knew he could be like, Okay, I'm confused. I'm, I'm lost help me through this. But he did it all on his own, which was really cool.
Philip King-Lowe
Absolutely. I want to say this to my listeners here. Um, I know, you've all heard me, say and repeat 100 times about know your autism, and then become the expert about your autism and talking about it. And also, that part of self advocacy is telling your stories. And I think I'd like to take just a brief moment here to explain why I tell my listeners that. You see, all too often us Autistics are presumed literally incompetent at times, to speak up in a way that people will listen. And also, that somehow, its a terrible stigma that we are those placed upon us that somehow we don't understand what's going on with ourselves. So therefore, we can't talk about it. And then there's also the matter that, you know, because we are, we have these social challenges that we must not know how to make people understand. And I concur with that, because I have my days, when I feel like I'm talking to somebody, other than my husband of course. When I'm talking to somebody and or, you know, and explaining to them how my autism might be affecting me in this particular instance, it can feel like the person on the other end just isn't listening or paying attention, I get that. But at the same time, what I want to say is I say, be the expert about your autism. Be the expert about talking about your autism, and tell your story, because only you know what being Autistic means for you. This is why I say this all the time, my dear listeners. We do need to tell people that we are not incompetent about knowing who knowing ourselves. We really do. We do need to, we do need to do some of that advocacy for ourselves. Um, Autistic individuals, we have a great sense of intelligence, we have we do have our communication strengths and weaknesses. Just like any human person. We have our emotions that every person has. Ours just works differently in terms of regulating versus dysregulating. But the point is, we have a story to tell about what being Autistic means for us. And I say it on every show, because I want to encourage other Autistic Adults, like myself, that when you tell your stories, when you tell somebody what being Autistic means for you. And that is part of the reason for this podcast in the first place. I want the Autistic Adults who listen in, and the caregivers who are listen in, to feel empowered and to give empowerment to themselves, to advocate to tell your stories and tell people what you know about yourself. Because when people are hearing those personalized stories, now they can actually put a person behind what they think the stigma applies to. And they can begin to say "no, actually, that stigma is completely incorrect." They need to know that those things happen. And that's one of the things one of the things that I believe that would be so importantly beneficial to this matter of community based services. Um, you know, I am a complete fan of just just telling people, this is the experience that I've had, and letting people hear about that experience. And I also know the frustration of feeling like somebody is not listening. I know I experienced that all the time. Well, there is also the theory of that if you tell that story enough times, even to the same person, however, they might or might not be listening. Eventually, they may; I say may because there are no guarantees in this business, unfortunately. But they may just start to say, you know, maybe I really am not listening like I should, maybe maybe I should be paying attention. And by all means, talk with network with others who are experience and the same things. And talk about ways that you can all advocate together. Um, because, you know, I think one of the things that Looking Forward LC does, through your life coaching, and please elaborate this on on this if you if you so desire, um, is you help people to learn how to how to tell their stories about themselves. And you you give them some of those tools to be able to do that. Am I correct about that?
Sara Swan
You are, and it would only be fair, if I actually told you my story. And if you would like to know my journey, I'd love to share it.
Philip King-Lowe
Okay, please do.
Sara Swan
Okay, so when I was born, and this was in 1974, there was complications. And the easiest way to explain it is the umbilical cord was was broken. And I ran out of air. Okay, and I was caught for about four minutes. So and I know that's a little graphic, and I do apologize. But essentially, I had extreme cell swelling on the brain, I have seizures, I was black and blue. I'd sleep 23 out of 24 hours. They, the pediatrician at that time, came into the hospital room of my parents and said, there's no hope. She's never gonna be normal. Just put her in an institution now. There's, there's just nothing, there's nothing. She'll never be able to account to anything. And my parents went, No, we're gonna take her home and love her. My parents, my mother came from, my grandparents created, they first went back and got their Special Ed degrees in the 1940s, which didn't ever exist back then. And then they created what is now called a day program. The very, very first day program sheltered employment at that point for my uncle, with hopes that he could, he could be more independent. And so they knew what it was like to take someone home and love them. And if my parents had not done that, and had not made that choice, my life would be totally different. It would be totally different. Yes, I know, for sure I have some learning disabilities. I know I do have some delays. But I'm very grateful. And and with that comes the the desire to provide that level of hope and help to anyone I possibly can. I possibly can. And that's what Looking Forward Life Coaching does.
Philip King-Lowe
That is just wonderful. That is just wonderful.
Commercial Break III
Future Shows
On May 10th, I will publish the episode Autistic Adults and Independent Living. My guest is Dan Carmichael, an Autistic who is the co-owner of GT Independence. Dan will talk about what independent living can mean for Autistic Adults. Dan will also share his insights as an Autistic with an Autistic son, and what helping to develop GT Independence has been like for him.
On May 24th, I will publish the installment Autistic Adults and Justice in Employment. My guest is author and law professor Samuel J. Levine. Samuel Levine will talk about the challenges of employment for Autistic Adults and offer his insights to help Autistics work through the complex challenges with being employed.
Thank you for listening to Today’s Autistic Moment.
Philip King-Lowe
Well, Sara, I as I announced in my one of my ads for this particular program, I did say we are not going to solve all of these problems today. But the goal of this was to bring some of these conversations into a public sphere. And I feel like we have definitely done that. And and so this has been just a marvelous conversation and hopefully a marvelous beginning to some much needed policy change. But I also want to want to ask one last question, two questions please. And that would be, Do you have any resources that you suggest that some might reach out to to get some some kind of help when they're facing these challenges with community based services?
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Sara Swan
Oh, yeah, of course. You know, there, there are some great agencies out there, of course of, have to promote my own. What what we could provide were able to accept different kinds of waivers here in the state of Minnesota, CDC, SDS, GFSG. And we are almost almost there for family training, which means we can accept all waivers except for elderly. So so we're able to come alongside everybody and support them that way. A big piece that I would I would suggest is, you know, reaching out to every level of government that you possibly can and see what's what's out there. You know, there are there are great agencies that can provide great help. Like Pacer, Frasier all those kind of things. But it also kind of matters. If it truly is what's best for you. Many times, there is the one size fits all yet, it does not work that way. So, so we we spend a lot of time just really trying to, like I said, bridge those gaps. But you know, those are, of course I plugged for myself. I'm trying to think of some others right now off the top of my head. I'm sorry, I'm blanking a little bit.
Philip King-Lowe
That's all right. That's right. It's alright. Yeah, um, I would also remind my listeners that The Autism Society Minnesota has a public policy, has a public policy advocate. And there are they are working on some bills right now to be assist to help Autistic Adults in many ways. But there is a public policy advocate there. And there are people on staff there that that can listen to what you're experiencing and can possibly give you some some resources to go on. If you're in Minnesota.....
Sara Swan
Well, and sorry to interrupt here, Philip, but we were very right, I truly apologize for not following up with AuSM. Um, they've been a huge supporter of us from beginning. And I think what draws me to them, and it what has I have modeled myself off of them is the fact that on our board, we will always have either a client that has been former client that has been affected by the help of Looking Forward Life Coaching, or a parent or caregiver. And we've learned that from The Autism Society of Minnesota, because it's really hard to preach this support if you don't have people that are actually, you know, results of it. And, exactly, that's what I love about Autism Society of Minnesota.
Philip King-Lowe
Yeah, I totally agree on their advocacy and education is totally worth it. And, and I know I myself would I don't know where I would be without them. And ultimately, they've done with and for me. So um, Sara, if people want to reach you, how can they do that?
Sara Swan
The best way is to look at our website, which is lookingforwardlc.org. And on there, there's an email, and you can email us for info@lookingforwardlc.org. And I'd love to do a free meet and greet right now we're doing virtual. And we are able, we're in all seven Counties of the metro and on and now we've actually started accepting clients from other states since we are able to do this virtually. And we since we are nonprofit, we can provide some scholarship or reduced rates for people who may not receive waiver support or state support. We just really want to be able to provide whatever we can to anyone who needs it.
Philip King-Lowe
That's wonderful. Yeah. Well, Sara, thank you so much for being on today. And indeed to my listeners, if you have questions, please email Sara. And if you have questions for me, you can always email me at PKLowe@ todaysautisticmoment.com. Thank you, Sara.
Sara Swan
Thank you, Philip. You are just a pioneer. You're changing the ways and I love it.
Philip King-Lowe
Thank you so much.
Transcribed by https://otter.ai
Today’s Autistic Community Bulletin Board
Go to ausm.org to download AuSM’s 2021 Summer Recreation Catalog. There are some great recreational activities for Autistic youth and young adults to have sensory friendly days at fun places like Silverwood Park, the Bakken Museum, the Minnesota Zoo, Wood Lake Nature Center, the Walker Arts Center and the Mill City Museum. These sessions are limited to 12 participants, so go check them out to register soon.
Supplemental Needs Trust Planning virtual skillshop will be on May 11, 2021 at 7pm at The Autism Society of Minnesota. Rachel Schromen is an estate planning and elder law attorney and owner of Schromen Law LLC. Rachel will talk about the best planning practices to protect those you love who are autistic.
Planning for the Unexpected: Emergency Preparedness for Autistic Adults. This virtual skillshop will be on May 25, 2021 beginning at 7pm at The Autism Society of Minnesota. Eric Ringgenberg will give some tips about reviewing the basic items that make up an emergency kit to prepare for the unexpected.
Steps for Autism in Minnesota will take place on Sunday, May 23rd, 2021 from 9am to 12pm at Como Lakeside Pavilion on 1360 Lexington Pkwy. N. in St. Paul, MN. With safety in mind and social distancing in place, AuSM will offer participants a walk route, fun activities, an autism resource fair, and opportunities for community connections. Those who prefer virtual access will find autism business and organizational resources at ausm.org and will be able to walk their favorite route in their own and on their own time.
Thank you for listening to Today’s Autistic Moment: A Podcast for Autistic Adults by An Autistic Adult.