Geralyn Arango Deeley (00:12): Hello, and welcome to season four of Our Parallel Paths: A Future For my Loved One With a Disability... and For Me! I'm your host, Gerry, Dr. Geralyn Arango Deeley, and this podcast is about just what the title says, the parallel paths of family members, certainly parents, sometimes siblings as parents age or pass on, and their loved ones with intellectual disabilities. I'm a parent myself, and I always have questions. Our Parallel Paths is about nurturing and supporting ourselves as we nurture and support out loved ones with intellectual disabilities. Our roles as family members are ever-changing and evolving alongside our loved ones, so there's more than one path, more than one future to talk about. And that's why we're here. I hope the stories and perspectives of my podcast guests and me give you hope, information, and ideas for your path. (01:11): So welcome to... I had to break it up. I wanted to share more information, and I wanted you to go, you know, get, refresh yourself to come back for more. And so we are back with Jessica Fenton, who is a supports coordinator as well as, she is the director of Miracle Works of Pennsylvania Supports Coordination Organization, an SCO 'cause we love jargon in, um, in this world. And so we talked last episode about the help that's out there in the form of supports coordination, and that somehow or other, you may already have the supports. What we wanted to do was to kind of flesh out some of the pieces of what that means as well as figure out how to optimize. And our last episode, we started out with kind of getting all the vernacular, all the vocab, getting the glossary going. So we talked about what supports coordination is. And if you did not listen to that episode, you might want to go back and give it a listen to get yourself up and running, um, 'cause Jessica shared some good information there. And we talked about what is being coordinated, um, this term waiver. And I love the fact that waiver really means that we waive the option of, um, putting out loved one into, say, a group home in order to give them options in the community. (02:41): And, and ISP, how it's different from an IEP 'cause those of us who've been through K-12, plus, plus, um, we know that phrase, IEP, and we are also being introduced before or during the school years to an ISP. And that's where supports coordination really kicks in. Um, and so at this point, thanks again, Jessica, for hanging in, for being on the podcast part two. And I think what I would like to do with the rest of our time together is I think maybe let's start with your story and how you, where you started with all of this, 'cause you said you were on one of the first people to be trained in HCSIS, right? And go back to that other episode if you want to know what that one stands for. But, um, how did you get into this particular line of work, and where did you start, and how did you end up where you are with your own agency? Jessica Fenton (03:37): Okay. Well, thank you for having me again, Gerry. It's an absolute honor to be here with you. Um, so I, um, started out... I guess my journey started out at Westchester University. I got my bachelors in social work, and I had the good fortune of great teachers there who actually had the civil service come out and do the testing at Westchester University. So I was lucky enough to have it right at my fingertips. Took the civil services exam, and a few months later, I got called by the county to come in for an interview. (04:10): I knew nothing about the disability system. I didn't even know it existed at that point. Got hired with, uh, the Delaware County, um, Office of Intellectual Disability Supports Coordination Organization. But at the time, it was called OMR, the Office of Metal Retardation. Geralyn Arango Deeley (04:26): Mm-hmm. Jessica Fenton (04:27): It has since changed, thank goodness, and it is, uh, the DelCo SCO now. Geralyn Arango Deeley (04:32): Okay. Jessica Fenton (04:33): So that is where I started. So I started in September of 2000. Geralyn Arango Deeley (04:38): Okay. Jessica Fenton (04:40): Um, so I was there. Um, during my time at Delaware County, um, I wanted to go back to school. So I went back to school, got my masters in education with a specialty in counseling. But I, I did, I loved my job. You know, I had supervisory, um, opportunities. I never took them because I loved being out with the clients. Geralyn Arango Deeley (05:00): Okay. Jessica Fenton (05:00): But while I was going for my masters, I really, uh, enjoyed the consultation aspect of it. So I started doing some consultation on the side, um, with people that were trying to get into the disabilities system as a provider. So I just would help some female entrepreneurs, you know, get into the system and help them learn what it was about. And as I was doing that, I thought, "Wow, why didn't I do this myself?" Geralyn Arango Deeley (05:26): Ah. Jessica Fenton (05:26): So that's, that's, that's kind of how that started. Um, and I also then, you know... I also had a child, and, you know, wanted to really y- you know, um, expand. Um, so that's how starting my own agency came about after doing some consultation with some other service providers. Geralyn Arango Deeley (05:46): Okay, okay. And- Jessica Fenton (05:48): I retired from the county. I know it's, it's... (laughs) I retired from the county in 2020, so I got my 20 years in. And- Geralyn Arango Deeley (05:55): Oh, wow. Jessica Fenton (05:56): Yeah. Geralyn Arango Deeley (05:56): Okay. Jessica Fenton (05:56): So 20 years with Delaware County, and now I am with Miracle Works Supports Coordination. Geralyn Arango Deeley (06:02): Okay, you- Jessica Fenton (06:03): Very, very blessed. Geralyn Arango Deeley (06:04): You're the director of Miracle Works. Jessica Fenton (06:04): I am. Geralyn Arango Deeley (06:06): Okay. Jessica Fenton (06:06): Yes, I am. Geralyn Arango Deeley (06:07): And- Jessica Fenton (06:07): Executive director. Geralyn Arango Deeley (06:08): ... you get to do a little pitch for your organization. What, you know, what do you, you feel between the experience you have, what does your organization bring to the supports coordination organization concept? Jessica Fenton (06:20): Well, I think what we bring is we're very small. We're t- teeny tiny, small potatoes next to the big SCOs. Um, so we bring a family-like atmosphere, um, with Miracle Works. We are able to keep the case load sizes very low. S- your supports coordinator is going to be more available to you because we're able to keep lower, lower case sizes. And with being such a small agency, you always have access to the director. So I know everybody, you know, in the agency, and I am able, um, to get on a phone call with a family, you know, the same day that they have the need or, or perhaps the next day. But I'm always available, um, and I think that's where smaller agencies really shine. Geralyn Arango Deeley (07:04): Mm-hmm. Jessica Fenton (07:05): I think that they're able to have that, uh, family atmosphere that, unfortunately, the big agencies, um, can't do. Not saying... There are some fantastic SCOs out there- Geralyn Arango Deeley (07:16): Mm-hmm. Jessica Fenton (07:16): ... that are working their butts off and that are absolutely wonderful, wonderful options. But s- that's the difference that I see. Geralyn Arango Deeley (07:24): Okay, okay. Well, that's a wonderful difference. Um, (laughs) I don't know that this would now have you getting people calling and making your organization try to be bigger (laughs)- Jessica Fenton (07:24): (laughs) Geralyn Arango Deeley (07:34): ... because, like, "Oh, that sounds good," but I wonder, too, when it comes to, you know, someone who is in a larger agency or is in the county, what do you see as the challenges that those agencies have in supporting families? What are the bigger, what are the bigger agencies' challenges? Jessica Fenton (07:55): I think, uh, the bigger agencies' challenges are actually finding Jessica Fenton (08:00): Supports coordinated and, and filling those empty caseloads. That's... Unfortunately, supports coordination is a lot of work and it's, it's, it's definitely a highly stressful position, and there is so much information to learn. I've been doing this for 24 years and I don't know everything- Gerry Arango Deelely (08:16): Mm-hmm. Jessica Fenton (08:16): ... at all. There's still so much that I don't know. So, you know, when you're first hiring something, it's, it's very overwhelming. So, there's a lot of turnover because of that. So I think that's where the bigger agencies struggle with. I think the state is really trying to address it. They're trying to address it with rate increases and, and different incentives. Um, but that's, that's definitely, um, something that the big SEOs have to deal with on a daily basis. (08:43): So sometimes, you're not gonna be able to get to your supports coordinator because they might not be there. So you want to go up to the supports coordination supervisor. You want to call the direct line and ask for who the supervisor is on so-and-so's caseload, so then you can get a supervisor who can help you with a need while they're waiting to fill that position, if, if you don't have a supports coordinator. Geralyn Arango Deeley (09:02): Okay. Because it has never been my impression that people didn't want to do the job, you know? Jessica Fenton (09:02): Never. Geralyn Arango Deeley (09:07): Never. Jessica Fenton (09:08): Never. Geralyn Arango Deeley (09:09): Never. I mean, like I said, we've been through quite a few supports coordinators in our time, and a couple different agencies, and I never thought, "Oh, this person's slacking off," or, "They don't care." It felt like... (laughs) It always felt like, "Wow, I'm glad you're doing this job because I wouldn't want to." Jessica Fenton (09:26): Yeah. Geralyn Arango Deeley (09:26): You know? It just seemed, and that's what's, what you're saying, is that it's a tremendous amount of information and then you have a tremendous amount of people to support. And then, the agencies don't have a tremendous amount of people doing the supporting. Jessica Fenton (09:42): Absolutely. So the supports coordinators that are there are going to have high, high caseloads. And they're probably trying to help out and cover, you know, people that, that, you know, need, need to be seen and that need help. But it's never... I, I've never come across people that don't want to do it. It, it's more people might get burnt out or, or might get overwhelmed by the system and feel like they're, they're not gonna be successful, um, because of all of the, um, information that comes along with it. Geralyn Arango Deeley (10:11): Okay. Ah. That's, that's validating because that's always what it seemed like. Wow, what a job. You know? And so, if you are... If a person is in that situation, yes, they have to kind of re-realize that these folks might have really large caseloads. I'm wondering, what would you advise to be able to really maximize the use of whatever, you know, attention your supports coordinator can give given that they have only so much attention and so many people? Jessica Fenton (10:46): That's more of a systemic issue. Geralyn Arango Deeley (10:48): Okay. Jessica Fenton (10:49): Um, so I think that maybe contacting the state, letting them know your experiences. I think the state always likes to hear from families and see what's happening with the boots on the ground, and I think that that's important. But I also think it's important that families know that they have choice. So if there's ever issues that you, your agency just, you know... Your supports coordination has done their best, but they just can't meet your needs. Geralyn Arango Deeley (11:11): Mm-hmm. Jessica Fenton (11:12): You just know that you always have choice. You have choice for providers. You have choice for supports coordination organizations. And there are a lot of great organizations out there. Um, I'm not the only small SEO. There are other small SEOs that give exceptional services, as do s- a lot of the big ones as well. Geralyn Arango Deeley (11:29): Mm-hmm. Jessica Fenton (11:29): But you have, you have choice. You, you can go to another SEO if your SEO isn't, isn't meeting your needs. Geralyn Arango Deeley (11:35): I think people don't realize that it's... I mean, I know when I... The first time I made that change, I felt like I was hurting somebody's feelings. I felt like I was hurting the county's feelings. I felt like, oh my goodness, you tried so hard, but I need something else. And, you know, eventually I got over that. (laughs) But at first, I felt like, oh, you're gonna think... Ah, 'cause I'm... I've got some issues, I suppose. (laughs) Jessica Fenton (11:36): (laughs) Geralyn Arango Deeley (11:59): But, um, but, um, what, what do you do? Jessica Fenton (12:00): So it's... Geralyn Arango Deeley (12:03): I mean, if you say to yourself, "I need to make a change," how do you even start that change? Jessica Fenton (12:10): So first of all, don't feel bad. Okay? You're navigating... A supports coordinator is, is responsible for helping coordinate all of the services that is going to enable your loved one to live as independently and as successfully as possible. So, don't feel bad. It happens all the time. (laughs) And somebody else is gonna come along and they're gonna fill that caseload, so don't you worry about leaving (laughs) somebody. Geralyn Arango Deeley (12:36): (laughs) I know. [inaudible 00:12:36] Jessica Fenton (12:36): (laughs) There's always gonna be a need there. (laughs) Geralyn Arango Deeley (12:36): Don't have to be like that. Jessica Fenton (12:40): (laughs) But if you do decide that you, you know, you wanna see what else is out there and there just might be a better fit for you, um, you want to contact that county administrative entity that we had talked about in the previous episode. So you want to call your county administrative entity, whether that's... You know, we're in the southeast region of Pennsylvania. Get ahold of them. And you want to talk to their intake coordinators usually, but you want to ask about who you talked to about switching SEOs. (13:06): And they will get you in touch with the process. They'll get you a r- a release of information form. They'll tell you what SEOs are available. They'll reach out to that SEO and say, "Hey, are you able to take this person?" And then the transfer can happen. Um, some counties are quicker than others. But y- your best bet is just to keep on it and, and like I said before, you have to be your own self advocate. Geralyn Arango Deeley (13:27): Mm-hmm. Jessica Fenton (13:27): You have to keep advocating. These administrative entities are also really overwhelmed. There's so many people coming in to this system. Um, they've opened up our system for people with autism as well, so that's essentially... Uh, I, I can't speak to the numbers, but I, I would think that at least doubled the amount of, of consumers- Geralyn Arango Deeley (13:27): Okay. Jessica Fenton (13:27): ... that come in. Geralyn Arango Deeley (13:47): Okay. Okay. Jessica Fenton (13:48): So you just don't have to have an, an ID. You can have a, a diagnosis of autism, that you don't have the ID diagnosis. So there's been such an increase in the amount. So the administrative entities- Geralyn Arango Deeley (13:48): I'm sure. Jessica Fenton (13:58): ... are also really overwhelmed. So you might get lost in that if you're trying to, um, transfer. So you just keep up on it. Uh, call them back. Email them back so they don't forget about you- Geralyn Arango Deeley (13:58): Mm-hmm. Jessica Fenton (14:08): ... to get that transfer going. Geralyn Arango Deeley (14:10): I guess even like write it down, keep it on your calendar, your phone calendar or whatever that you just kind of- Jessica Fenton (14:15): Yes. Geralyn Arango Deeley (14:15): ... remind yourself because- Jessica Fenton (14:16): And once a month, check it. Hey, how's it going? Geralyn Arango Deeley (14:18): Yeah. Jessica Fenton (14:18): Is this done? You know. Geralyn Arango Deeley (14:19): Yeah. Jessica Fenton (14:20): Yep. Geralyn Arango Deeley (14:20): And again, i- you know, people like me who have to get over the, uh, why doesn't anybody like me kind of thing, and say, that's, it's... You know, what I think about at those moments is like, "I'm doing this for Nick." Jessica Fenton (14:29): That's right. Geralyn Arango Deeley (14:30): You know, pull a picture of him, (laughs) you know, of some place. Jessica Fenton (14:30): Absolutely. Geralyn Arango Deeley (14:33): With or without a beard. And, you know, just, just say, "That's what this is for." Jessica Fenton (14:38): That is what it's for. Geralyn Arango Deeley (14:38): Yeah. Jessica Fenton (14:40): Yeah. And, and don't worry about other people's feelings. You, you just frame it, "Hey, I just think that this might be a better fit," i- if anybody were to question you. Geralyn Arango Deeley (14:40): Mm-hmm. Jessica Fenton (14:40): But no. You're doing it- Geralyn Arango Deeley (14:40): Yeah. Jessica Fenton (14:49): ... for your loved one. Geralyn Arango Deeley (14:51): Okay. Okay. Because that is, first of all, to know that you can. And then second of all, to know how you can do it. Jessica Fenton (14:51): Mm-hmm. Geralyn Arango Deeley (14:58): And again, you Googled, um, intellectual disability services Pennsylvania, and you got information. So if you're not sure, like, w- who am I supposed to call, look it up. One of the other things that I noticed is that, from time to time, there are, um, just service provider fairs where... Do you do that kind of stuff, or? Jessica Fenton (15:19): Yes. I... Actually, because we're small, we don't go to the provider fairs. Geralyn Arango Deeley (15:22): Okay. Jessica Fenton (15:23): But we actually, uh, are in process. We just missed one, but I think there's another one in June that I think we might go to 'cause we do have some limited openings. Geralyn Arango Deeley (15:32): Mm-hmm. Jessica Fenton (15:33): But yeah. Go to the provider fairs. Um, I don't know how many SEOs go there, uh, but there's a ton of provider fairs so you can meet different providers. Geralyn Arango Deeley (15:40): Yeah. 'Cause I feel like, well, you know, there's... How do I know? And it's like maybe if you see that in your email or online or wherever you see it, um, it's a way to just kind of go from table to table and- Jessica Fenton (15:55): Absolutely. Geralyn Arango Deeley (15:55): ... talk to people. Jessica Fenton (15:57): Absolutely. Geralyn Arango Deeley (15:57): Get, you know, a pen or some candy, Jessica Fenton (15:58): ( Geralyn Arango Deeley (15:58): ... Geralyn Arango Deeley (16:00): ... Andy, my personal favorite,- Jessica Fenton (16:01): (laughs) Geralyn Arango Deeley (16:01): ... um, and, and really just talk to the folks at the SCO's, whoever came for it, and learn about their philosophy, learn about how they, you know, how big they are, how small they are, how do they... Jessica Fenton (16:01): Mm-hmm. Geralyn Arango Deeley (16:13): ... and ask them all the questions, you know? Jessica Fenton (16:15): Absolutely. And, uh, you know, if you can't get a date, 'cause some supports coordinators, that might not trickle down to them necessarily, but call that local AE that I was just talking about, call the B number and just said, "Hi, I'm a parent, can you tell me when your next provider fair is?" Geralyn Arango Deeley (16:16): Mm-hmm. Jessica Fenton (16:28): And just get that information, and they should be able to give it to you right away, or they'll say, "Hey, we just had one, can you call back in a couple months and we'll have the exact date for you?" So reach out, give a quick phone call to, to that AE- Geralyn Arango Deeley (16:29): Mm-hmm. Jessica Fenton (16:40): ... and get that information. Geralyn Arango Deeley (16:41): Okay. Okay. Because I do feel like, I mean, one of the other ways that I learned about organizations was word of mouth. Jessica Fenton (16:48): Yes. Geralyn Arango Deeley (16:49): And, and- Jessica Fenton (16:50): I find that that is by far the best. Geralyn Arango Deeley (16:52): Yeah. (laughs) Jessica Fenton (16:52): (laughs) Geralyn Arango Deeley (16:52): Uh-huh. Jessica Fenton (16:53): Um, you know, people put their best foot forwards on the provider fairs, but I think word of mouth is by far the best because that's how we find good provider agencies for our guys. Um, we hear, you know, from a colleague how great this provider was and how they helped them in a situation. So, um, then we'll use them, or I might use them for one particular consumer and the SC, I'll tell the SCs, "Hey, why don't you try this person? They're, they're wonderful." Geralyn Arango Deeley (17:21): Mm-hmm. Jessica Fenton (17:21): So I think that nothing bets word of mouth, and I, you know, I've been around for 24 years and I, by far- Geralyn Arango Deeley (17:27): Mm-hmm. Jessica Fenton (17:28): ... that has been the best way to find quality providers. Geralyn Arango Deeley (17:31): Mm-hmm. So adding parents in your support group,- Jessica Fenton (17:34): Yes. Geralyn Arango Deeley (17:34): ... um, asking your... Jessica Fenton (17:34): What is your experience? Geralyn Arango Deeley (17:36): Yeah. Yeah. Jessica Fenton (17:37): How, how, you know, who have you made out, who have you seen to, that maybe isn't gonna be a good fit and who have you seen who would be a good fit? Geralyn Arango Deeley (17:43): Mm-hmm. Because even agencies that I have used in the past, other people loved them, and it's like, you know what? I'm, I found, I, I'm learning because I know what did you love about them, and we needed something different or- Jessica Fenton (17:56): Right. Geralyn Arango Deeley (17:56): ... whatever, and so there's, there's no harm in that. And- Jessica Fenton (17:59): Absolutely not. Absolutely not. Geralyn Arango Deeley (18:00): And so even if it's like, "No, that's not what I want," at least you're finding out from someone who's actually actively using their services. Jessica Fenton (18:06): Yes, and there might be, there might be a situation where you have heard great things and you might like them, they just might not be a good fit- Geralyn Arango Deeley (18:12): Mm-hmm. Jessica Fenton (18:12): ... or there might be a little bit of staggering, they can't find really good staff at that c- b- correct moment, so your best bet for your loved one is to get an agency that can help you. Geralyn Arango Deeley (18:22): Mm-hmm. Jessica Fenton (18:23): So again, don't feel bad. This is... You have the right to choice. You can go through, you know, three different agencies until you find the right fit. It's all about what is best for your loved one. Geralyn Arango Deeley (18:33): Mm-hmm. Okay. So that's, that's huge and, and completely memorable because, um, I, as much as it can be also overwhelming and we really need supports coordination to be reliable, to be f- you know, accessible and findable, and to be responsive. And so, you know, as, as we figure out what our loved one needs and what we need from the agency to navigate these, all these systems, um, it's okay to kinda shop, but it's- Jessica Fenton (19:06): Sure. Geralyn Arango Deeley (19:06): ... but it's, and it's also really imperative to advocate and make the call and be a little persistent in things. Um, you know, one of the good things about an agency that I no longer use is that when they said, "Oh, you have community living waiver, you're done," I, you know, I went, "Oh no you're not. Oh no, oh no, no, we're not done, we're not done." And I made case for why we're not, because, you know, of all the things that, you know, I was widowed, my daughter was in the military and my s... it's just the two of us here. And they kept, they kept it going for me at the, at the level where it needed to go. So one day I got a phone call that said, "Guess what? You've got the consolidated waiver." And it was one part me saying, "No, no, no, we're not done," and one part them saying, "You know what?", to whoever, "She's not done." Jessica Fenton (19:55): Yes. Geralyn Arango Deeley (19:55): "This family isn't done." Jessica Fenton (19:57): Yes. Geralyn Arango Deeley (19:57): "They need more." Jessica Fenton (19:58): And that's why self-advocacy is- Geralyn Arango Deeley (19:59): Mm-hmm. Jessica Fenton (20:00): ... I think, the most in- integral part. You have to use your voice. Geralyn Arango Deeley (20:04): Okay. And then when it comes to, okay, I got a waiver, yay, got a waiver, um, lovely that they've all gone up some, how can a supports coordinator help us to kind of optimize how we use this funding? I always think of it when people... I tell people that I've got a waiver and I can't explain it to the typical folk 'cause they have no real whatever, I kind of say it's almost like you have a grant that you spend down. You know, and it's not, but it's sort of like that's a way to say it to people who really don't need to know, they're just curious. Jessica Fenton (20:38): Yeah, that's a really good way to, to put it. Geralyn Arango Deeley (20:40): Yeah. Jessica Fenton (20:40): Uh, you know, uh, use it like a grant, because people know what grants are. Geralyn Arango Deeley (20:44): Yeah, exactly. Jessica Fenton (20:44): People don't know what waivers are, but if you say, "I have a grant and I get this much money a year." Geralyn Arango Deeley (20:47): Yeah. I don't get anything in my pocket. Jessica Fenton (20:49): Yeah. Right. Geralyn Arango Deeley (20:50): As a matter of fact, as a common law employer, I don't get anything in my pocket. Jessica Fenton (20:50): (laughs) Geralyn Arango Deeley (20:53): And I, if I clock my hours, I should have some money. But, um- Jessica Fenton (20:56): It's a labor of love. (laughs) Geralyn Arango Deeley (20:58): Well, it totally is. And when I see, um, when I see progress and I see, like, "Oh, we did it," you know, or even when we didn't, it's like, you know what? We're moving forward, and forward sometimes is three steps forward, two steps back, you know, it's a little bit of a waltz. But it is in motion and we have the funding. So the question I think that comes to mind now is, how can a supports coordinator help you to sort of have conversations and optimize how you use the funding? Jessica Fenton (21:26): Well, so you wanna talk to your supports coordinator about what your needs are. Um, a supports coordinator should be asking that question, "Hey, what's going on? What do you need? Or what does Nick need to succeed? How is he doing with his job? Is, you know, does he have enough job supports?" Um, and again, you just wanna be vocal about what those needs are. Please don't sugar coat it, please don't hide things from your coordinator. Be honest about where the struggles are- Geralyn Arango Deeley (21:26): Mm-hmm. Jessica Fenton (21:51): ... so they can sit down and they can say, "Okay, well, it looks like he might need some in home supports," or, you know, "He can't be left alone at night, um, so I think we need to get some companion in there." Um, uh, you know, "He's struggling at work so we need to increase the employment supports by two hours a week. That's really going to help him." So you just, you need to talk to your coordinator, you need to make sure that they know what all the, the issues are so they can help you add whatever services they need into that plan. And if you don't have the waiver that you need, they can get you on that emergency list- Geralyn Arango Deeley (22:25): Okay. Jessica Fenton (22:26): ... to wait for the next waiver to come. Geralyn Arango Deeley (22:27): Okay. And there's these opportunities that are kinda built into the system like, okay, we have an annual meeting. Jessica Fenton (22:34): Exactly. Geralyn Arango Deeley (22:34): Our meeting is coming up next Friday, and I feel like, you know, I have to prepare and I have to read that document that's made in, like, what, a three point font? Jessica Fenton (22:44): (laughs) Geralyn Arango Deeley (22:44): (laughs) Um, that, that's like, oh, this hurts my head. But to sort of review it and think about it. Um, but then is... I know we at this level of waiver get monitoring quite frequently. Jessica Fenton (22:57): Mm-hmm. Geralyn Arango Deeley (22:57): Does everybody get monitored? Jessica Fenton (22:58): So, well, they should. Geralyn Arango Deeley (22:59): Mm- hmm. Jessica Fenton (23:00): Um, again, that, that, that can be a shortcoming with some supports coordination organizations that struggle, but for regulation purposes, you absolutely should be getting monitoring. So the community living waiver and the consolidated waiver have the same monitoring frequency,- Geralyn Arango Deeley (23:14): Okay. Jessica Fenton (23:14): ... and that's every other month. Geralyn Arango Deeley (23:15): Yeah. Jessica Fenton (23:15): So every two months, you should be talking... your supports coordinator should be completing monitorings. The PFDS waiver, which is that first waiver, that's every three months. So at minimum, a coordinator should be conducting monitorings every three months, and that's going to help them get the full picture of what is, is working- Geralyn Arango Deeley (23:34): Mm-hmm. Jessica Fenton (23:34): ... and what the challenges are and what they can do, you know, to help maximize supports with you. Geralyn Arango Deeley (23:41): Okay. 'Cause that's, that's huge too. It's like we need the opportunities to have conversations, and- Jessica Fenton (23:47): Yes. Geralyn Arango Deeley (23:47): ... some of them are built in. Jessica Fenton (23:48): Yes. Geralyn Arango Deeley (23:48): And so, so yay. Okay. Um- Jessica Fenton (23:51): Yes, if you're not getting regular monitorings if you have a waiver, um, you need to, uh, let that supports coordination supervisor know- Jessica Fenton (23:51): ... so, Jessica Fenton (24:00): So- Geralyn Arango Deeley (24:00): Okay. Jessica Fenton (24:00): ... so they're aware. Because you, you really wanna make sure that- Geralyn Arango Deeley (24:03): Mm-hmm. Jessica Fenton (24:04): ... um, they're doing the job that they're supposed to do. Geralyn Arango Deeley (24:07): Okay. Okay. Okay. Well, how about I... is there anything else that you think families need to know that we need to go a little deeper in or that I forgot to ask? (laughs) Jessica Fenton (24:19): Uh, I know we talked about self-direction a little bit. Geralyn Arango Deeley (24:20): Yeah. Jessica Fenton (24:23): I mean, that's a whole nother... (laughs) Geralyn Arango Deeley (24:24): That's a... Yeah. (laughs) Jessica Fenton (24:27): So I know that you're the, uh, common law employer, Gerry, and, and that's not a paid role. Self-direction is, um, a great system in Pennsylvania, which is a model for people that want to self-direct their services. And what that means is somebody like Gerry hires their own staff and they manage that staff. So they're self-directing. Instead of having a provider agency, um, direct those services, you are essentially directing those services. So, um, it saves the state some money, and usually you can, uh, pay your staff a little bit be- a lot better wages. Geralyn Arango Deeley (24:27): Yes. A lot better wages. Jessica Fenton (24:27): A lot better wages, which- Geralyn Arango Deeley (24:27): Hopefully that's enticing. Jessica Fenton (25:04): ... which... yes. Geralyn Arango Deeley (25:05): Yeah. Jessica Fenton (25:05): And, and that helps with retention. Geralyn Arango Deeley (25:07): Sure. Jessica Fenton (25:07): Um, and it usually gives you, you know, uh, the quality services that you're looking for. So I suggest that family members look into that, um, for self-directing, for people that might have staff that are able to work with- Geralyn Arango Deeley (25:21): Mm-hmm. Jessica Fenton (25:21): ... your loved one. Geralyn Arango Deeley (25:22): And you can hire some family members as well. Jessica Fenton (25:25): Absolutely. Geralyn Arango Deeley (25:26): I as the common law employer will not get paid, but I can hire members of my... H- H- We actually just hired Nick's sister. Jessica Fenton (25:32): Fantastic. Geralyn Arango Deeley (25:32): Um, because why not? And we've hired, you know, again, word of mouth kinds of stuff, ads, whatever. Um, but yeah, you, your, you have a lot of leeway in who you might be able to hire. Jessica Fenton (25:47): You do. You do. The, the one thing that you, families need to know is you can't be the common law employer and staff. Geralyn Arango Deeley (25:47): Right. Right. Jessica Fenton (25:51): So they have to be separate ro- roles. Geralyn Arango Deeley (25:54): Mm-hmm. Mm-hmm. Jessica Fenton (25:54): Um, but yeah. You can hire family members. You can hire neighbors. You can, um, uh, y- you know, r- essentially you, you hire who you think is going to work best. Geralyn Arango Deeley (26:04): Mm-hmm. Jessica Fenton (26:05): Now, that does come with its own challenges. Geralyn Arango Deeley (26:06): Yes. Jessica Fenton (26:07): Uh, you have to make sure the staff is keeping their service notes. You have to make sure they're working on their goals. Geralyn Arango Deeley (26:11): Yes. Everybody just got a text. Jessica Fenton (26:13): Yes. Geralyn Arango Deeley (26:13): Like, everybody in that service [inaudible 00:26:15]- Jessica Fenton (26:15): Yes. Geralyn Arango Deeley (26:15): ... because I have to be accountable, um, you know,- Jessica Fenton (26:17): You have... Right. So- Geralyn Arango Deeley (26:17): ... to the county with the progress notes. Jessica Fenton (26:19): ... that SLE is a labor of love. You have to do quarterly, uh,- Geralyn Arango Deeley (26:23): Yeah, progress notes. Jessica Fenton (26:24): ... progress notes to make sure that people are at least maintaining, that you guys are reviewing. So i- it does come with strings, it's not, you know- Geralyn Arango Deeley (26:24): Mm-hmm. Jessica Fenton (26:33): ... an easy thing. But it is, when it works, it works beautifully. Geralyn Arango Deeley (26:36): Yeah, 'cause, I mean, I did a, I think I did a podcast episode back when, I called it Gerry's Angels because it was like, you know what, for me, a lotta times it's texts and, and- Jessica Fenton (26:44): Yes. Geralyn Arango Deeley (26:44): ... emails and phone calls because I'm not on site. And that was sort of challenging too, and how do you manage your staff in all the different ways? Jessica Fenton (26:51): Mm-hmm. Geralyn Arango Deeley (26:51): And it was even, as I was researching and kind of talking from my own experiences, it was still instructive of me, of like, what can I do differently? Um, and so, yeah, managing staff, hiring and managing staff is its own challenge, but it's, it's, ah. S- I think something I heard about that I, I hope to l- I hope it really happens [inaudible 00:27:14] talking about, um, you know, th- making this a sustainable model- Jessica Fenton (27:19): Mm-hmm. Geralyn Arango Deeley (27:19): ... because I'm the common law employer, but part of this is, you know, passing that on, like, it's, it is still my job. Is there a way to kind of turn that job into something a little more where someone else manages pieces of it for me too but there's- Jessica Fenton (27:37): Oh, absolutely. So one of the services you could do is get a supports broker, which- Geralyn Arango Deeley (27:41): Mm-hmm. Jessica Fenton (27:41): ... which you have and he's a wonderful- Geralyn Arango Deeley (27:44): Mm-hmm. Jessica Fenton (27:44): ... e- excellent support broker. So I definitely think that, um, that's a- an amazing tool for CLEs to have. Geralyn Arango Deeley (27:50): Yeah. Jessica Fenton (27:50): A support broker can help you, uh, with the management of your staff and help you hire someone,- Geralyn Arango Deeley (27:55): Yeah. Jessica Fenton (27:55): ... help you design those progress notes that are best for your, um, for your staff and for your loved one. Um, so that is a great tool. Um, but if there's reasons, you know, health reasons, any kind of reasons, um, you know, an unfortunate, um, death, someone else can be the CLE,- Geralyn Arango Deeley (27:55): Mm-hmm. Jessica Fenton (28:15): ... so you can move it from one person to another. Geralyn Arango Deeley (28:17): Okay. Jessica Fenton (28:17): And sometimes needs change. There might be, uh, a loved one that is the CLE that needs to become the staff person. Geralyn Arango Deeley (28:23): Yeah. Mm-hmm. Jessica Fenton (28:24): And so they could give up their role as the CLE and become the staff person as long as there's another CLE that is, is willing to step in- Geralyn Arango Deeley (28:24): Okay. Jessica Fenton (28:30): ... um, and, and do that. And it's a, it's a wonderful, wonderful, um, m- model. Geralyn Arango Deeley (28:37): Mm-hmm. Jessica Fenton (28:37): And most of our families that utilize it, um, it, it works beautifully, but it definitely is you have to be prepared that the, you are going to have certain responsibilities- Geralyn Arango Deeley (28:48): Yeah. Jessica Fenton (28:48): ... when you're the common law employer. Geralyn Arango Deeley (28:49): So I'm glad to know that a supports coordinator can be there as one of the people, um, you know, giving input, giving advice, pushing the paperwork that makes my head explode through- Jessica Fenton (28:49): (laughs) Geralyn Arango Deeley (29:03): ... the system to get what Nick needs and ultimately what our family needs. So, um, I'm so glad you came to part two of the podcast- Jessica Fenton (29:03): Yes. And, and, um, yeah. Geralyn Arango Deeley (29:15): ... and spent a whole nother half an hour of talking. (laughs) Jessica Fenton (29:15): So real fast, I just wanna let all your listeners know that if you do decide to self-direct and, and go with that, uh, self-direction model, you can also have a combination. You can have traditional providers and self-direct. So you can self-direct some services and still have traditional providers come in and help you where you're not able to fund your own private staff for the hours they need. So, so you can definitely mesh the two models together. Geralyn Arango Deeley (29:39): Yeah. That's what we do, and I, I always think of it. I've had people kinda parse it out like, "Well, that's not self-direction." It's like, it's all self-direction to me- Jessica Fenton (29:46): That's right. Geralyn Arango Deeley (29:46): ... because, um, it's all what we said we want. (laughs) Jessica Fenton (29:47): That's right. (laughs) Geralyn Arango Deeley (29:50): Like he's got a job, he's got job coaches through an agency, he's got overnight staff right now, four parts home health agency, one part staff I've hired. And then there's all the other people who kinda bounce through the, the week. And so to me, that's what we want and we call that self-direction (laughs)- Jessica Fenton (29:50): Yes, ma'am. Absolutely. Geralyn Arango Deeley (30:09): ... even if it's not technically so. So Jessica, thank you so, so, so, so much for being on this podcast. This was, I think, one of our most important episodes, or a pair of episodes, uh, because I feel like I have learned more about taking advantage of the expertise of a supports coordinator and a supports coordination organization, um, and I think that what we've been talking about is not true only to your organization, but to others as well. And I hope that wherever you are, listeners, um, it helps, has helped to clarify, um, some of the complications that happen as our loved ones enter the adult world and all those worlds of things that we qualify for and, and how an SCO and a supports coordinator can be of help. So listeners, thank you so much for spending time with us today on this episode with Jessica Fenton, Director of Miracle Works, on Our Parallel Paths: A Future for Our Loved Ones with a Disability and For Me! And I hope that you'll like and follow our podcast, that you'll share it with family and friends, and I really hope you'll return to listen and learn from more stories of people like you and me and a loved one with a disability on Our Parallel Paths. You are not alone. I'll see you next time.