What is Epilepsy Pralid

Thursday, November 2nd

At Epilepsy-Pralid Inc. (EPI), their mission is to be a successful partner for all individuals with developmental or acquired brain conditions as they strive to remove barriers to their personal fulfillments. EPI has an enduring legacy of partnering with those they serve, their families, and others in the community to provide education, training, advocacy, and tailored support solutions to meet the physical, behavioral, and social needs of each person who chooses the agency as a trusted resource.

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He's a much grab being with us again today it's CD waters and this is neighbors in need and we invited back our gases from epilepsy trailer and we have justice in the box the president and CEO and Paul acres the vice president of a community services thank you for being here thank you are gonna say that's going to showcase to lay this time amen Jaffa only worry and and you had brought Mike and at that time. It felt like I mean here we have fifteen minutes. It's only be hardly scratched the surface of all the things that you guys do in all the information may you can give us so. We imagine Bakken and cut matter no it might deem a enjoy this time a lot what I always raises Hendrick after the stock and Cynthia could hurt. But it has now today. And I wanna go through May need. Just break it down and why you guy is Jew who use Sarah how you how you serve news those individuals and let's start first with the name apple let's see pray Atlanta. Where did it come about the name. Yeah hey it's pretty interesting we go by EPI so you can you can call us CPI's you'd like oh we're actually the merging of two separate agencies who had. The epilepsy foundation of Rochester Syracuse and Binghamton. And pray lead was an agency and that's an acronym for people rebuilding and living in dignity. Hahn both agencies serve people would brain injuries. Both agencies serve people would developmental disabilities there was a lot of common ground in what we did the class and and so we came together in 2012. Finalized in 2013. And that hyphen that epilepsy pray let that high thin drew represented marriage of equals that was really what we wanted to portray it wasn't one agency taking over the other it was. To coming together in a partnership to bring out the best of both agencies so vettori got Aaron usually. How long did it take because with you know every year that passes there's more research there's more of that owned this is connected to that. How long did it take to say well brain injury is connected to. You know this other yet. So it's it's it's kind of unusual in that that you know epilepsy and brain injuries are are the types of of disability that they piggyback with other things on developmental disability probably being. An overarching theme. That connects it but it was really about the approach in the way that services. We're delivered that really kind of helped bring us together Oca. Was added challenge to marry all those together. You know you have development so. Disabilities you have brain injuries you have epilepsy you have ought Suzanne meant everything really is. All under the same umbrella but a lot of individuals think of them as very separates the. He had a sit so you can look at it and a couple different ways one is if a person who has epilepsy comes to us in and it's our intake program and impulse department. We can look at them and say do they have epilepsy is a standalone and then we have a funding stream to cover that they have. Apple ups the end of brain injury and then there's might be another funding stream to do that apple up Siena developmental disability another. Funding stream to do that says to the individual who comes to us for them it's I need help or need assistance they command. And then we help connect him to things so there's a lot more connected to the and we actually can smooth things out on the back. Probably the primary way of that it's the same is the approach that we take two to services and and you know Paul is a great. I champion of a person centered services it's a kind of a buzz terminology everybody can kind of pass to give it at least lip service but from. It's something that we really live and breathe and do so you know we believe that everyone we serve should live in those least restrictive environment they should be and and really lived the life that they want to live and the more in control of that they are. The better off and I think that's really the common theme is that. We do a really nice job of listening to the individual finding out what they want and then letting them control the outcomes of what they do. Without any judgment being passed on what they're looking to do or. That that there's in this field there's a desire to be protective because you're working with such vulnerable people sometimes. And a desire to guide people on the kind of services they get. But people tend to thrive most when they're in control of their own lives as we Elmo so. There's that's really the overarching theme with so it's not really about what is the barrier standing in the way of getting the lights that you want it's really about. Making an individualized plan for everybody that comes to us and walking them. Through after moving away from supporting the diagnosis we're supporting an individual and individuals more than just a diagnosis. So I can do and he's somebody might have more than one diagnosis and that might inform us on how to best support them. But let's just for saying we want to make sure that we are helping people engage in things that are important and meaningful to them that there are part of the community that they wanna be a part of the third down. They're building relationships that are important to them they're doing the things that they wanna do. And they're not pigeon hole based on how they're labeling of having not certain diagnosis. What is the big lists heard all I guess is it just getting the word out that hey you guys worst year we're here to help. Or would you feel it do individuals. Easily find you guys or. I would say no I'm not how I would say you know we were not I'd household name a lot of people not heard of who we are even though works pretty large organization we have you know over 500 employees week. Have offices in Syracuse Binghamton were housed here in Rochester selling your new Louis area and been around now that we've been around so. We're we're not good at self promotion that way about but people tend to hear about us. Through the grapevine. I doubt about approaches and styles so we we do have a pretty good referral mechanism. In which people want it to us enacted that burn a pre merger I think it's important understand both those agencies were pioneering agencies I think epilepsy foundation was really a pioneering Haitians see in this region. In terms of supporting people autopilot seek. And even more so pray that wasn't up Tyner an agency in brain entry. Not just local event in the state as far as creating services for people that weren't getting services before it source we merge these two I think part of our challenge is to let people know that. We heard the continuation of Dole's very important legacies in this in this community. How many people do you opt it's over 6000 people. So it's a lot of people we serve what what are things it's kind of a source of pride for us is. We serve probably one of the widest spectrum is a need that you can have none. So I and our highest need individuals which are small numbers of people would very big need. We we are kind of an anti institutionalization. Organization we've we've removed. I several people from different institutional settings. I settings where. Brain injury. Institutions developmental disability institutions sometimes mental health nursing homes. And we get them into. These are people that don't have choices of their service and I always you know I would say to employees and I talk to them. I get a roomful of music how many people aspire to live in a nursing home. How many people aspire to live in a mental health facility right so these are people that have no choices and these are environments that that there isn't a lot of dignity there's good medical care. But then there's good clinical care to the diagnosis like policy talking about. But there isn't really good quality of life I visit that you want life what do you want to do and so we take those folks who we bring them out. We give them choice that's one end of the spectrum. The other end of the spectrum is very light touch point there are people that we serve with the epilepsy services. That might just come to a team weekender come into our camp for kids of epilepsy once a year and a quick touch point. That's at college scholarships that kind of thing so. That theme of of just listening to work person is. Making sure that we hear what they want and and look at their choices and then lay out an individualized plan for them so he said what is it that you do I can. You know we could say generically we run residential services and we have to advocacy services that we do date training services. But but really it's what ever that individual wants then we try and lay out back custom course of action. And so that's really success is a one person at a time thing for. I think he's gone back to back individual customizing each individual must be. So challenging because everybody is so unique yes. How is dad something that's in need right now is to get volunteers or staff for. The yet set so that did the challenges we you know one of the things that we've been looking at I'm. And developing we've done this for Wallace type of service called self direction. Okay so the idea isn't traditional services you have a model you have a group on the you have a day program and you put somebody in it and they fit or they don't fit in your environment. We were trying to move into an environment where someone has given a pot of money to control the services they want. So if if you wanna take a martial arts classes opposed to going to a clinical counseling to help you with your self discipline and control. You can do that if you want to. On get trained on and I'm living independently or do something like that you can do that. None were taken and you want talk a little bit about the initiative bird were with it it's it's hard to help people get. That customized life experience because you're constantly checking yourself because we've all been taught to be sort of parental. Good individuals of high needs so why you talk about some of the stuff for doing now. On the right well I think what you wanna talk a little bit more about self direction to such a big push I'm for a lot of different agencies and community wise I'm as far as. What's up direction as in some direction is basically the person directing their own services or the family members helping the person direct their own services. Does somebody out of that I know that gets self direction she come she's very insistent on hiring her own she chooses who she's gonna hire. She does the hiring herself she does that interviewing herself. And she said it was really important for her to do that peace because she didn't. She requires a lot of physical and hands on care and she several carpenter but this way. Who would you want to see you naked. Are you once or somebody just sent to your house ringing the doorbell coming in and say I'm here to you know provide personal care. Or do you want somebody that you know well that should trust you feel comfortable with to be able to provide that Internet and frequent care. And that would can always resonated with me across the board is that you don't we're gonna have people coming into our homes and helping us out. In very intimate settings and we should have some sort of control as to who that's going to be. And especially in the developed mental disability world. That's we're really moving more towards that because I think people are understanding how important that is for people to have. As much control over how the supports are doing as possible and that's something that we're very committed to doing something that we're really pushing as well. I might think we're gonna grow in that department increased significantly ensure. Existing 'cause there's a huge need for there was a time when that wasn't the case it was I think you're right that it was in and in a bad way are malicious way but. The parental all OK I know it Muni mean you can we do we didn't take the time to say yeah. Enters this this and still is a to a degree this kind of assumption of philosophy that. If I need some help that means to you get to have control over all my help yes and that's or even doubt that I need and I'm I think we're finding that that's not really the case just because they need maybe help with some bathing or hope for my money management doesn't mean I need you to make decisions for me around other things in my life like cool I'm going to hang out with an. Where I go from for fun and things of that sort yet. We all do things you know will we nights drink alcohol we might smoke cigarettes we might eat unhealthy foods we make choices like this the picture if doctors were controlling every aspect of your life and they they regimented how you exercised in what you putting your body and when you did it and and while you would be compliant. You probably would not have a high quality of life because in addition to losing control of what you do you're missing out on on those added pieces and so. No one can tell us what to do but yet it's okay for us to tell. Somebody with a special need. What they can can do so the idea is to try and get away from that and and in Paul's department. Made this really big effort we're digging apart everything every policy and procedure in the agency everything that we do we're just kind of shredding apart. And looking at it and saying is this supporting people in the fullest extent possible to be in control so from everything from like the thermostats in our group homes. Do the individuals who live there have control over them in at at at any point in time from something that simple to hide it we handle our money and how to we hire staff and how do we include the people that that that. You know we do right onto strategically what we're doing is an agency and Paul talked about. How do we are decisions around our own health care as well if I you know I. Don't wanna take medication might make it a good decision around that and and do I have the up power to say what you know of this medication doesn't make me feel good so I should be able to say. I don't wanna take this mantra should be an alternative to taking that medication so and help out and health choices in general who might doctorates and what dentist to let go to. Now this approach is obviously more time consuming them morbid challenge but it just shows that you guys are doing it for the right reasons yeah. Epilepsy trailer does. In existence because you truly do want to help individuals and Mets. Wonderful and meaning so it's so awesome to hear that you really generally deep down mod individuals to so live a happy. The field life and if you need assistance or guidance. I'm from epilepsy privilege you can breach. How to damp. Let's go through first how we can reach out to you and then if we did. His again if we're ready yet it's hot it's like we dare I charger and our. We love how you probably think everyone who works truce talks as much as we you know. Are you guys are so passionate about it and that's good so refreshing to hear you and don't be so first how do we reach out you and then if we can go through some of the calendar like the upcoming events. Sure so you can now probably the best ways to go on our website is side www. EPI NY dot org it's a great way our calendars on their contact information. Those things are mainline is 4426420. Seat could call. That line and and and get connected to it to any of us. Those are probably the best ways it's an old. In the big upcoming events not a big upcoming events so November is up what's the awareness month so we have side dinner with the doctors and support groups and some other information. I'm on our web site on the web site by November 28 we have a fund raiser at the job black button distillery. It's called cocktails and conversation so you can come out with this then it's 25 dollars a person at 6 PM. The 9 PM that night and then of course our in December 7 we have a holiday party we do for children. That that we provide service to Santa Claus comes week about presence. That I believe they're closet in the mr. Michael Dell is our hearts and clubs. Surprise you makes you believe in San. I'm nick. When you meet with them and then of course on February 3. Is our chocolate Boller largest fundraising event that supports people would epilepsy and and really a lot of the epilepsy services what Mike does and and and some of the pieces were talking about today are funded from the money generated at that event so that'll be at. At the Hyatt it's a great time and you get to Eads deserve to free dinners it's it's a great way to come and enjoy some time with us. On any services for the individuals ire. In three. Four individuals that have Medicaid and and meet the criteria they're usually free the ones that aren't free we we tend to subsidize some pretty heavily. So even even if there is a fee for the small number of people but you have to pay for services. The fees are are very minimal and ask contingent upon. Has an has or group of folks to be able to secure funding strokes Microsoft and so that should in its not people should should call first to yeah anger towards the assumption that you can't afford it yes my. Thank you so much for everything that you jail now thank you for having a son thank you so much.