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Disability Advocacy & Breaking Barriers | James Anderson · We're With You

• Olivia/Becki: you think your future would look like? James: I thought I had no future. You know, there are going to be clients that are listening to this that are living in group homes and thinking that this is this is it for me. I have nothing beyond this point. And I know that from experience because when I lived in the group home phase, I thought it was the end of everything for me. I thought there was no getting out of this. Olivia/Becki: All right, well, welcome, James, James: Thank you. Olivia/Becki: to the Where With You podcast. If you could introduce yourself and then tell us a little bit about yourself. James: So my name is James. I am not only a Regional Center client, but I also have my own nonprofit and I'm a disability advocate, couple things. first of all, going to different job interviews and stuff and the application saying no experience necessary, and then getting there at the interview and them saying, Well, we're looking for somebody with more experience. that just blows your self-esteem quite a bit when it's denial after denial after denial after denial. The other portion was is known as having a physical disability. Knowing how hard it is to fight your way through life. And so many people with disabilities don't know how to advocate for themselves. But if they do, they may not know how to navigate the system well. That's where I come in with 43 years of experience. is knowing the system well enough. And so if I can give those and with disabilities an opportunity to learn how to advocate for themselves. And grow their self-esteem, you know, be able to see the growth that they're going through. It could be something as easy as, you know, it doesn't have to be an advocacy thing. It could be something as easy as a client is having a problem with their computer. they call me and then they're like, I can't figure this out on my computer. And then 10 minutes later they call me back and say, hey, I figured it out. Well, that's growth right there. That's progress right there. So that gives me the fulfillment as well is that I get to see the growth that they're doing and the progress that they're making. Olivia/Becki: Could we switch gears a little bit? Yeah, James: Absolutely. Olivia/Becki: and I'm just kind of wondering what your childhood was like with cerebral palsy and James: it's it that's a very in-depth question. Olivia/Becki: Okay James: there's so much that went on. I as a child I was not this happy go lucky person, you know. I was a very angry and vengeful and hateful person. That's one of the reasons one one of the bigger reasons I was that way is because as most people with disabilities are, they don't like Speaker: talking about. James: Because they don't understand why they have it, they're embarrassed that they have it. There's a lot of unknowns there. And it's so easy to just shake your fist at God and go, why, why, why, why, why? Why did I get this? And so that's the other portion of it is breaking them out of that shell. Understanding that they don't, their disability does not have to be a cr a crutch. It can be a ability to help others who have disabilities. as a child, it was hard growing up. I mean, because I didn't know how to control how you know, express how I was feeling. If I got angry for me, a coping mechanism that did not work, that they tried getting to work was leaving the room, walking out, taking deep breaths. No, the more I took deep breaths, the angrier I got. Because the more I'm thinking about the problem. It was the exact opposite of how they were. working with me. So one of the ways for me to calm down was to put earphones on and listen to music I like that allows my mind to get the focus off of the circumstance that's making me angry. Olivia/Becki: Yeah. if anyone's listening, whether it's a parent or a child with a disability, and they're also angry and going through a hard time because of all the things maybe you mentioned, what advice would you have to them? James: Reach out to me. It's it's very difficult to get that's the difficult portion. I can't put like even policies and stuff on everything, I can't put it down into a book because we don't have a one size fits all format. We understand each client's circumstance is going to be different. So if they if they're going through that and they're just at their wits in, reach out to me and I'll see what I can do. Olivia/Becki: So growing up, what did you think your future would look like? James: I thought I had no future. You know, there are going to be clients that are listening to this that are living in group homes and thinking that this is this is it for me. I have nothing beyond this point. And I know that from experience because when I lived in the group home phase, I thought it was the end of everything for me. I thought there was no getting out of this. Eventually, through pushing and pulling and prodding a little bit. I finally got my family to allow me to move into my own place. I have now successfully lived on my own from twenty twelve until now. My family didn't even think I'd last thirty days. Olivia/Becki: you did. James: I did. my family and my mom and stuff just in the past couple of years has said James There's been a lot of improvement in you. There's been a lot of growth. I didn't even notice it myself because I was just living my day like I normally would live my day. And I think really establishing the nonprofit helped me grow Olivia/Becki: So today you see yourself as a self-advocate. Did you always see yourself that way or how did you tap into that? James: Primarily growing up, my mom was my advocate. Speaker: And so. James: Tell her this, but learning from her a lot. And then being conserved for 20 years. Conservatorship obviously is a legal guardianship. To start the nonprofit, there was a hurdle that I had to go through with conservatorship, because under the laws. If a person is conserved, the conservatoire has a lot of power over them, Even to the point of to an extent employment. So there's a lot of power there that they give to protect the conservative, but again, sometimes it goes too far. And that's why advocacy is so important. The statement that I have is you don't know what you don't know. So if you don't know how to advocate for yourself, how can you advocate for yourself? If you don't know how to fill out the Medi-Cal or the CalFresh paperwork, how can you fill out the Medi-Cal or CalFresh paperwork? If you don't know how to deal with Social Security, how can you deal with Social Security? And that's under our traditional services. We d also just don't serve people with cerebral palsy under traditional or self-determination. We serve individuals of all disabilities. Olivia/Becki: Can you explain for the listeners that don't know what self-determination is, what that is? James: Yes, the easiest way to describe it is it gives more flexibility on how the taxpayer funds are used. the self-determination expands the traditional services. And also helps fund non-traditional services as well. So for example, under my self-determination spending plan, they pay for massage therapy for me twice a week. And that's due to my all the medical and rods and stuff in my back. They also picked up original center, also picked up a service animal for me. Which is not a traditional covered benefit, Olivia/Becki: And we have Lily here. Lily's your dog, your service dog. Yes. So what made you want a service dog? James: balance and falling eight times last two a year, two years ago. Wow. Definitely needing it. she brings comfort and calmness. I can't take her anywhere where somebody doesn't say, I wanna take her home with me. I wanna steal her away from you. Olivia/Becki: That's already happened this morning. We're dog lovers here. The biggest dog lovers in the room. James: All you gotta do is schedule a time and I don't Speaker: mind bringing her up. James: but because of the need of my balance and stuff, they were able to pick it up. So it's very confusing, and that's why you have somebody in my position to be able to be there and explain it to people, is because it is so confusing to understand. And it's such a tedious process to enroll. But at the end of it, it's beneficial. It's not for everyone. And you can opt out of self-determination at any time along the way, even during enrollment. And that's Olivia/Becki: So what would you say to somebody who's considering this program but may feel overwhelmed? James: Don't try it on your own. Okay. I've had typically when I get a client, they're already pulling their hair out because they tried to enroll on their own, go through the process, and now they're at their wits in like, should I continue? Should what should happen here? Don't go through it on your own. Get somebody who has the professional knowledge to do it. For me, it's not about the money. It's about assisting the client getting into the program that I know will benefit them. Olivia/Becki: Yeah. it's a lived experience for you. And so you can actually help somebody in their daily life. James: Absolutely. And it it definitely is beneficial. Olivia/Becki: James, what kind of clients do you support? James: We support under our traditional services. We support clients that aren't regional center clients and clients that are. So there's a difference between our traditional services and our services that we provide under self-determination through regional center. Well, most of the service coordinators in regional center know me already as it is, whether the good or the bad. Because I have had regional center service coordinators where I have had to be that thorn in their side. give an example on that. I had a client in North County who I we had just finished their person center plan. And we were supposed to get started on the budget and the spending plan. Well. What happened is that Friday, as we were supposed to get started the Monday after, the service coordinator emails the parent and says, you know what, I'm going on a vacation for the next six weeks. did not sit well with me. So that's what I mean by I don't mind being that thorn in regional center side if I have to. And I will let them know where they are wrong. Olivia/Becki: Well, it comes from just, again, advocating for your client and helping them get the resources they need. Yeah. James: Right. Olivia/Becki: You have to do that sometimes. James: And that's my job within the regional center system. And my nonprofit gets paid through the regional center system. I play that dual role, which is unique as being a client and being vendored with them, where they pay the nonprofit. So it's a very unique role and unusual. So that's why you have somebody like a professional in my field that knows the program well. to be able to help explain it because the way the regional center case managers are gonna explain it is, you know, very legalistic, if you will, in the legal sense. I break it down into the individual elements to make it more understandable for you. in. Olivia/Becki: It sounds like we need a lot more of you to help people navigate this process. So if somebody was inspired by you listening to this, how could they do what you do to help other people? James: one of the things we do in the nonprofit, as I said before, having so many areas where having to here fill out an application, then here, no, you know, we're looking for somebody with more experience. We hire on our clients as volunteers to give them that experience of this, you know, on hands experience at different events, whatnot. This is how you appropriately communicate with a, you know, a potential employer at an event. This is how you communicate and do things. So it's that hands-on experience. It's that in-person experience that allows for the you know, to to be able to get to that point. Olivia/Becki: makes a lot of sense. James: And there is a process for becoming a volunteer as well. You don't actually have to be a client to be a volunteer. It is preferred, especially with those with disabilities, because at that point we already know you, we know your strengths, we know your weaknesses, we know where we can help you improve in various ways. So it it is beneficial to be a client, first and foremost, whether it's under traditional or whether it's on under self-determination. And need I make the point that if you are a client under self-determination, it doesn't mean we can't help you in the traditional realm. The difference being is, and regardless, we don't charge for our services, even under our traditional clients. We can't legally charge under our self-determination. We can't ask the client or the parent for money, cash, or payment for the services. We legally cannot do that. Regional Center doesn't allow it, the state doesn't allow it, the federal government doesn't allow it. there are clients children clients after we in after I enroll them that I will not charge for the services ongoing. So we provide the ongoing services. I refuse to charge because independent facilitator, which is my title, is not a traditional covered benefit. So the money has to come to pay me from traditional services. So if their budget is extremely low, I'm not going to take away From traditional services that they're already struggling to get that will benefit them. I refuse to do that. It's it's not right to do. And my board has also made that decision as well. So that's what I mean by it's not about the money to me. Olivia/Becki: that the board supports you and it just shows how much of this is a passion for you and how much you care. And I can say, I mean, just talking to you, can see why you're so good at this because you're so articulate and you understand this world. And so I can imagine for those that do not, you're just this like champion for them, helping them along in the process to get to where they need to go. Where can people go if they're not familiar with their rights? James: I mean, there's there's the Americans with Disabilities Act website. There is Disability Rights of California. There's many different companies out there that they can go to. Another place they can they can go to is on our website. we have resources from across the United States on the website, each one named in different states. We even have a one that is labeled other resources or something along the lines of that. Our California resources page is filled with California resources, including a join, is on there. So we are all across the board on resources. Olivia/Becki: So what made you decide to do the foundation? James: When I first established the original foundation, my thought process was because of you know, had it being successful and doing all the legal stuff on my own, because I had no attorney help whatsoever the first go-around. And so I thought, well, you know, it's it's me establishing it. Why not name it after me and my disability? The confusion comes in is when I'm advertising, but you only work with individuals with cerebral palsy. I did not see that in the beginning as a problem. Speaker: But I do. James: Now And that's why we named the new nonprofit something different, where it's James and Friends Disability Advocacy Network. So the name is known as inclusive. Olivia/Becki: potential clients find you? How do they learn about you? James: If you need help under our traditional services, there is a client intake form on our J and the website is actually JCPF.org. I can give you the actual client intake form link, it is JCPFCA dot or g forward slash client hyphen intake. Python form. And that will take you to our actual page where you can click on the hyperlink, which will then take you to a new client intake form, which is fillable through Adobe Sign and completely private. Once we receive that form, it allows us to understand what your actual need is and how we can formulate a plan to fit that need. If it's the self-determination that you want to get involved with, that is a totally different form. And this one would be easier just to go to the website because on the top, there is a link that says SDP forward slash independent facilitation. And that will take you to it's right on the top. I mean, it's its own hyperlink on the top of the menu. I am the only one that's allowed within the regional center system to do the independent facilitation at this time because I'm the only one that has gone through the training to be able to do it. So you won't get any of my other board members or any of the other volunteers doing it. It will be just you it at this point, it will be just you and me working together Olivia/Becki: What do you wish people understood about those others with disabilities? James: Are you talking about individuals that don't have a disability? Don't walk on the other side of the road. And I say that figuratively and liberally. if you're an individual that quote unquote doesn't have a disability, realize that they have a lot more challenges that they have to go through and a lot more struggles to get through life. And what we don't need is added stress on us to do it. Olivia/Becki: What would you say to people who have a friend or family member with a disability, they want to be a support, but they don't know how? James: the phone number you can reach me on is 619-323-1782. That's my direct business line. You can reach me at my email, which is SDP. That's Sam Delta Papa at James CPF. That stands for like cerebral palsy foundation.org. My preferred is phone call. So if you reach out to me by via phone, that's gonna be the best way. Olivia/Becki: thank you. 1 of the questions we ask everybody is. What is a story or what is something that's not being talked about? James: Disability history. There is a link on my page about on our website on the jcpfca.org about disability history. Now because of not only the Rehabilitation Act of nineteen seventy three, I think it was nineteen seventy three or seventy nine, but also the spin off of the Americans with Disabilities Act in nineteen ninety, I believe it was or ninety one. Disability rights are exploding, yet people still don't know how many rights they actually have. you have to know your rights. That is a very, very big key thing. Just like service Olivia/Becki: what's one thing you hope listeners take away from this episode talking to you? James: That there's hope on the other side, that there there is always a path forward. It's the path is not going to be the same for every person. And you just gotta figure out the pat you know how your path is gonna work out. You have the ability to establish your own steps. And it's figuring out what those steps are. They're obviously gonna be baby steps first. You're not gonna go from the frying pan into the fire. you're not gonna go from being you know, taking little steps to being a gymnast immediately. That's not gonna happen. So there is going to be frustration there. There is going to be hardship there. But it is possible. It's just a mental change. And you have to figure out how to make that mental change and figure out how to establish those steps. And what I mean by steps, I mean our goals. start out with a small goal. Hey, I walked one block today. In a few weeks, I did two blocks. So just start out with small goals and end up with large goals. Olivia/Becki: What legacy do you hope to leave through your work? James: That my impact on people was great, that they were able to advocate for themselves and understand that they can do it, that there is a path there for them, that they were successful on their own, and that they can teach others through the life lessons that I taught them to get there. Olivia/Becki: I just think hearing your story, especially talking about, you know, what you thought your life would be as a child to now, how much of an inspiration you are to others, because I feel like there's probably so many people. that feel like they don't have a future or they don't understand their behaviors or they don't understand their child's behaviors. And then they just kind of write it off. And it's like, if you would have written yourself off or if your parents would have written you off, look at what you wouldn't have become. You are doing so much good for other people that it's just like, you're so resilient and it's so remarkable to hear your story. So I'm so glad we were able to interview you because You're just a testament of like how your disability is not a disability. It's like without who you are and what you have. You wouldn't be making a difference. You're making so much more difference for others than most people are just in their everyday lives. James: A join and I are with you and we both ignite possibilities. Olivia/Becki: I love And Lily girl does too.