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. (00:41): Our Parallel Paths is about nurturing and supporting ourselves as we nurture and support our loved ones with intellectual disabilities. Our roles as family members are ever-changing, and they're 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. (01:12): So I'd like to first give a season four shout-out to Networks for Training & Development, who have given me this tremendous opportunity to invite in and listen to people like you and me, connected somehow to the parallel paths of family of adults with intellectual disabilities. I have had the opportunity to talk to parents, I have talked to siblings, I have talked to supports brokers, to advocates, and every now and then I give you a little update on our path at our house or some ideas about the path from me. I hope that you'll keep coming back to the podcast because I love bringing it you as we travel the parallel path and take care of ourselves too. Knowledge is power, so thank you, Networks. (01:59): So let's get started on today. Um, I wanted to say, as you probably know, that there are universals to being family. There's the love, there are the challenges, and some kind of eventual "letting go" as our loved ones, our children, our siblings, whoever, move into the adult world, right? But there are also unique stories and challenges when your son, your daughter, your sibling, your loved one experiences disability. How do you let go in that case? When do you let go? Can you ever let go? Not that typical families fully ever let go either, but how can we help our loved ones learn interdependence and not be ourselves overwhelmed by all of the pieces that go into it. I mean, there are new systems to navigate when the IEP is over. Sometimes even before the IEP is over. Those and exciting but, you know, nervous transition years before the IEP gets put away for good. (03:05): It has always hit me hard that just as families move away from the school district, from the IEP, all that angst, we may not be done. As a matter of fact, we families often need to rally one more time to like eat our Wheaties or five bowls of Wheaties, um, and get ready, all of us, in my case, Nick, me, his sister, even his stepfather to transition to adult life where you are no longer entitled, as it says in IDEA, but you have to qualify for the services that our loved ones need. Families have to retool after the K-12 plus years and learn to engage with new systems, Social Security, the county intellectual disabilities' entity, whatever yours is. (03:58): The medical changes of your loved one comes off your health insurance at 26, like Nick just did. Fun. How to keep records, how to comply so that you don't lose what you qualified for, different agencies that might be providing some of the services. I'm not done yet, uh, money management and keeping our loved ones money under the radar so you don't lose benefits. Systems that just really don't seem to talk to each other as well as you wish they did or, or maybe they don't have a lot of understanding of what the other one does and if there are areas where they might dovetail, that makes me crazy 'cause families need information from trusted sources, families need support from trusted sources and from each other 'cause I mean, me, not getting any younger and don't think my brains getting any sharper so help, help. (04:55): The good news is there is help out there and you may likely already have it. The role of today's guest can and should provide major help in the form of what's called supports coordination, sometimes service coordination depending on where you are. I am excited to welcome today's guest, Jessica Fenton. Jessica is a supports coordinator and director of Miracle Works, a supports coordination organization in Pennsylvania or actually supports coordination organization and I might say a little jargon, an SCO. Chances are if you are a family member and you're listening to the podcast, you have a supports coordinator. Tada! Or somebody with that job, if it goes by another name in your state. Somewhere in your world there is a supports person. (05:45): I wanted to specifically invite Jessica to the podcast because she has experience working for the county as well as experience directing her own agency, and that's a depth of experience I'm interested in because I'm always concerned like about, am I doing enough? Am I doing it right? Who can help us here and now? I mean, Nick and I have been through our share of supports coordinators and supports coordination organizations through the years so I know how essential supports coordination services are and I'm guessing you do too. (06:19): I'm curious to deepen my understanding of the role of the supports coordinator as well as to learn more about what I can do to get the most out of our working relationship because my brains need to work with other brains. So welcome Jessica Fenton and thank you for being on the podcast. Jessica Fenton (06:39): Hello, Gerry. Geralyn Arango Deeley (06:40): Hi. Jessica Fenton (06:40): Thank you for having me. Geralyn Arango Deeley (06:41): Oh my gosh, I'm so excited. Jessica Fenton (06:42): I'm so excited to be here. Thank you Geralyn Arango Deeley (06:44): Yey! Yey! Um, could we maybe for the sake of whoever's listening and where they're at with stuff, can we start with some working definitions? Jessica Fenton (06:53): Sure. Geralyn Arango Deeley (06:54): My first question is, how would you define supports coordination? Jessica Fenton (07:00): Okay, so supports coordination is, uh, basically, a supports coordinator is going to be your team leader. They're going to locate services for you, they're gonna coordinate those services and then they're gonna monitor those services. The supports coordinator facilitates the team. They're the person you go to, um, when you need funding. They're the pe- person you go to when you need referrals to in-home support agencies, employment agencies, residential needs. So they're always going to be your touchstone in the system. Geralyn Arango Deeley (07:32): Okay, okay. Um, they also are people who I know adjust some of the budgetary- Jessica Fenton (07:39): Oh, absolutely. Geralyn Arango Deeley (07:40): ... items. Jessica Fenton (07:40): Yeah, the supports coordinators are going to look over your budget. They're going to make sure everything fits, um, within your budget, different waivers, um, and we'll talk about what waivers are and but different people have different budgets so, uh, they have to make sure that all of your needs fit into that budget. And if there are additional needs. (08:00): They're going to be the ones that contact the county, let them know about your needs and get you on a waiting list for additional funding. Geralyn Arango Deeley (08:08): Okay. Because I get kind of k- (laughs) kind of stiffened at the word, budget, because I didn't know it in my real life. So, now I- Jessica Fenton (08:17): (laughs). Geralyn Arango Deeley (08:18): Not that I have so much money, but just never budgeted anything. And so, it's kind of, um, a new piece for me to- to always be mindful of, even though, you know, you w- you may be under your waiver, you still have to kind of account for what you're spending so that you don't go over, but also so that, you know, h- you're making sure that you're using it well. And that's- Jessica Fenton (08:41): Absolutely. Geralyn Arango Deeley (08:41): Yeah. Jessica Fenton (08:42): Yeah. So, one of the things, you know, you had touched on in your intro, um, was entitlement versus a needs-based system. So, this is a needs-based system. It's not an entitlement system. So, everything's based on needs, not wants. Geralyn Arango Deeley (08:56): Mm-hmm. Jessica Fenton (08:56): You know, somebody may want 80 hours a week, but in reality, the consumer may only need 40 hours a week. So, you have to make sure that you show that there is a need and you have to make sure that you utilize that. If you're asking for a certain amount of hours and you never use them, um, then most likely a supports coordinator is going to go in and they're going to lower it because that's not a real need if you're never utilizing that service you have in the plan. Geralyn Arango Deeley (09:24): Okay, okay. Because, um, yeah, that's where I- I always think, how am I doing? And I have to keep looking back at ... W- we'll talk about later the ISP. Jessica Fenton (09:32): (laughs). Geralyn Arango Deeley (09:32): To see what kind of, um, hours we even are authorized for and how- Jessica Fenton (09:37): Yeah. Geralyn Arango Deeley (09:37): ... close I got to them. Jessica Fenton (09:39): Yep. Geralyn Arango Deeley (09:39): And I realize that I'm only one hour under, you know, right now. Jessica Fenton (09:42): That's fantastic. Geralyn Arango Deeley (09:43): Which might also mean that, oh, if I have new ideas, I might ... I need to come to you and say- Jessica Fenton (09:47): Mm-hmm. Geralyn Arango Deeley (09:48): ... I need to bump up the hours or something like that. Jessica Fenton (09:51): Right. Geralyn Arango Deeley (09:51): And then you talk to the county and say- Jessica Fenton (09:54): Yes. We would put in that ... It's called a Critical Revision for adults in our system ... Our plan is not an IEP. That's- that's for, uh, children, you know, coming from K through 12. Geralyn Arango Deeley (10:04): Mm-hmm. Jessica Fenton (10:05): Uh, we have a ISP, which is an individualized support plan. So, um, if there's a new need, we put that in and we take it to the county, which is the administrative entity. And they will either approve it, ask for more information or deny it, which in most cases they don't because there's always, you know ... There's usually a need. I- I don't really find that families ask for things that are frivolous at all. Geralyn Arango Deeley (10:30): Oh, okay, okay. I- I ... That doesn't surprise me. Um, but yeah, all right. So, that's good to know and just sort of be able to be confident in the fact that, if I ask for it, chances are I may well get it. Jessica Fenton (10:42): Absolutely. Geralyn Arango Deeley (10:43): But I have to ask for it. Jessica Fenton (10:43): Absolutely. Geralyn Arango Deeley (10:43): All right, all right. Jessica Fenton (10:44): You have to use your voice. Geralyn Arango Deeley (10:46): Okay. Jessica Fenton (10:46): And if we don't know that there's a need there, uh, you're never gonna get, uh, served. Geralyn Arango Deeley (10:51): Okay. Okay. So now, again, a little more vocab here. Waiver- Jessica Fenton (10:56): Mm-hmm. Geralyn Arango Deeley (10:56): ... we talk about waiver. What's waiver? Jessica Fenton (11:00): ( laughs). So, um, waiver is a term that I believe came up in the '80s. So, back in, you know, back a long time ago, um, in the '60s and '70s, unfortunately, most of the people with intellectual disabilities were served in institutions. And in the '80s they came out with these Medicaid waivers, okay? So, it's funded through Medicaid. That you're waiving your right to an institution. So, that's where the name, waiver, comes from. You're waiving your right to an institution and instead you're going to be served in the community. So, that's where the name, waiver, comes from. Now, the money attached to waivers differ. There are currently in the IDA system, um, three different waivers. There's a PFDS waiver, which stands for person family directed services. Um, that currently has a cap of 41,000 a year. (11:52): Then there's the mid-waiver. The mid-waiver came out, I would say, within ... Definitely within the last 10 years. Um, that's called the community living waiver. Most people will say CLW. And that currently has a cap of $85,000, which is a great waiver for ... Most of the families find their niche in that waiver and are able to serve, um, their family member very, very well under that waiver. And then there's the top tier waiver. Geralyn Arango Deeley (12:17): Oh. Jessica Fenton (12:17): (laughs). The Cadillac of waivers. Geralyn Arango Deeley (12:19): (laughs). Jessica Fenton (12:20): And that is the consolidated waiver. And that is a- a non-capped waiver. So, consolidated waiver has to serve all of your needs. Again, it has to be a need and not a want. You don't want to just add services that aren't needs. But that waiver is not capped. That's basically, um, the waiver that you want if somebody has to move into a group home residentially, because group homes are extremely expensive. So, they're the three different waivers and that's where the name waiver comes from. Geralyn Arango Deeley (12:46): Thank you. I always think about that as like waving that institution goodbye. Jessica Fenton (12:50): That's right. Geralyn Arango Deeley (12:50): (laughs). Jessica Fenton (12:51): Goodbye institution, hello community. Geralyn Arango Deeley (12:53): But yeah, yeah. And I mean, f- in our case, um, Nic not moving into a group home, I remember them saying, "Oh, you have community living waiver. You're done." And I said, "I'm a widow. I, um, my daughter is, " this is at the time, "Is in the military. If something happens to me, what happens to him?" Jessica Fenton (13:12): Mm-hmm. Geralyn Arango Deeley (13:12): And that was how I sort of made the case to keep going up, and up, and up. Jessica Fenton (13:17): Absolutely. Geralyn Arango Deeley (13:18): You know? And so, it enables Nick now to be able to live in the condo and all that good stuff, because I still kind of hold my breath as, what happens if I die tomorrow? Jessica Fenton (13:26): Right. Geralyn Arango Deeley (13:26): And as much as we work on putting things in place, this being in place, somewhat at least, is a huge comfort. But it was not without, you know, a lot of, "Hey, hey, I need it, I need it." You know? Jessica Fenton (13:40): Yeah. No, I mean, I- I think that's wonderful and I think that's where, um, this podcast comes in handy for a lot of parents, because you can learn to be your own advocate. You have to use your voice. You have to advocate, um, for needs that are going to be coming down the road. You know, the state has a system called PUNS, which is the ... You'll hear that all the time. If- if you're looking for additional services. Um, that's an acronym as well. There's a ton of acronyms- Geralyn Arango Deeley (14:08): Yeah. Jessica Fenton (14:08): ... in this system. So (laughs)- Geralyn Arango Deeley (14:10): Prioritization of Urgent Needs- Jessica Fenton (14:12): Urgency Needs. Geralyn Arango Deeley (14:12): ... status or something like that. Jessica Fenton (14:13): Yes. Geralyn Arango Deeley (14:13): Yeah. Jessica Fenton (14:13): So, the PUNS is basically, uh, layman's term, that's the waiting list. So, there's an emergency PUNS, there's a critical PUNS, and there's a planning PUNS. If you don't advocate for your loved one to say what their needs are going to be, you're not gonna be on that waiting list and then you're not gonna get the waiver that- that is going to best fit your needs. So, I- I strongly advocate, um, you know, advocating for your loved one. Geralyn Arango Deeley (14:40): Mm-hmm. Jessica Fenton (14:40): Because you- you want to make sure that they're getting all that they need and that you're planning for it. Geralyn Arango Deeley (14:45): Yeah. And I- I mean, alas I have come across parents who are wonderful advocates and I have come across parents who are truly overwhelmed and exhausted. Jessica Fenton (14:52): Mm-hmm. Geralyn Arango Deeley (14:53): And that's, you know, the person I kind of hope is listening, because if this little podcast can fill in some of the gaps to saying, "You know what? I got to make that phone call." And this is what's on the other end- Jessica Fenton (15:05): Mm-hmm. Geralyn Arango Deeley (15:06): ... you know, then that ... Then maybe I've done my job on that. Um, because, you know, there are so many stories out there. But there's the- ... There are these entities that can be of help if you use them- Jessica Fenton (15:17): Yes. Geralyn Arango Deeley (15:17): ... and- Jessica Fenton (15:18): And be honest. You- you don't want to go and say, "Oh. Sure, everything's fine. We're good. Don't worry about us." No, tell them what the needs are. Tell them the hard time that you're having. Tell them the issues that have h- arise, any behaviors that are coming. We need to get the full picture, so we can help you the best that we can. Geralyn Arango Deeley (15:34): Okay. And you don't necessarily come on board, um, in adulthood. I mean, Nic's supports coordination started much younger, unfortunately because of behavior issues. But, uh, but, you know- Jessica Fenton (15:47): So ... Yeah, so supports coordination, um, you can, uh, you- you can, um, start to get a supports coordinator, I believe now that you can get it as young as five. Um, usually you can come in right from the early intervention, uh, system, and get a supports coordination, but you're not going to most likely get services. Geralyn Arango Deeley (16:10): Right. Jessica Fenton (16:11): It would be supports coordination only. Geralyn Arango Deeley (16:13): Mm-hmm. Jessica Fenton (16:13): And that basically rides you up until the time that you're, that you graduate, whether it's 18 or 21. Geralyn Arango Deeley (16:18): Mm-hmm. Jessica Fenton (16:19): And then, you would go into the waiver. So you're gonna be supports coordination only that you have an SC, that checks in with you every six months, see how things are going. They will still write that ISP, it's an annual update. Um, they get all the updates so they can prepare you for the time when your loved one graduates or turns 21, that we can get you a waiver and get you services. So, hopefully, for all those that are under 21 and in the state of Pennsylvania, they already have a supports coordinator. If you don't, reach out to your local county office and get registered, so you can at least have supports coordination only to get yourself, um, prepared. Geralyn Arango Deeley (16:57): Okay. So, that is that first step is, is reaching out to the county. Jessica Fenton (17:01): Absolutely. You wanna reach out to your, your county program. Um, and- Geralyn Arango Deeley (17:07): Which changes acronyms every few years. (laughs). Jessica Fenton (17:09): Absolutely. It, it does change acronyms, (laughs), but um, you know, in, in the southeast region of Pennsylvania, there's, you know, Delaware County, Montgomery County, Philadelphia County, Bucks. And, what did I miss? Delco? Did I miss Delaware? Did I say that? Geralyn Arango Deeley (17:23): Oh, yeah. That's the first one you said. Jessica Fenton (17:23): Oh, that, it's the first one I said. Geralyn Arango Deeley (17:25): 'Cause that's where you are. Jessica Fenton (17:25): Chester County. Geralyn Arango Deeley (17:25): Yeah, Chester County. There you go. (laughs). Jessica Fenton (17:26): Oh, Chester County. Oh, I'm sorry Chester County. I missed you for a minute there. Geralyn Arango Deeley (17:30): Nice as it is. (laughs). Jessica Fenton (17:31): But, uh, yeah, they're all, and they're all called AEs, Administrative Entities. So you wanna reach out to your county Administrative Entity and get registered. Geralyn Arango Deeley (17:39): Okay. Okay. And yeah, like I said, it, it goes... I mean, when I first started, I think it was OMR. Jessica Fenton (17:45): It was OMR when I started as well. Geralyn Arango Deeley (17:47): And when, A, OIDD and O whatever. Jessica Fenton (17:49): Yeah. Then it was OID, now it's OIDD. Geralyn Arango Deeley (17:51): Yeah. So- Jessica Fenton (17:53): For Delco. So in different counties in, in, in Philadelphia County, they call it IDS. Geralyn Arango Deeley (17:56): Okay. Jessica Fenton (17:57): Intellectual Disability Services. In Delaware County, they call it OIDD now. Geralyn Arango Deeley (17:59): Okay. Jessica Fenton (18:01): And I'm not sure, uh, I believe in Chester County, it's the MHMR Program. Geralyn Arango Deeley (18:05): Yikes. Jessica Fenton (18:05): Or maybe it's the... It used to be, I'm actually not sure. Geralyn Arango Deeley (18:07): Okay. So I don't think that- Jessica Fenton (18:07): I can't keep up with the acronyms too. (laughs). Geralyn Arango Deeley (18:09): Yeah, yeah. But that one should have been wiped away. (laughs). Jessica Fenton (18:12): Yeah. I think actually it was, but I, yeah. So like I said, there's, they call it different things in different counties. Geralyn Arango Deeley (18:16): Okay. Okay. I just keep thinking about, all right. So if, I don't know, do I just Google Intellectual Disabilities Services or something like that? You know what I mean? Jessica Fenton (18:24): I would. Geralyn Arango Deeley (18:24): Yeah. Jessica Fenton (18:25): Yeah, I would. Um, I can, uh, try to put up on my website as well, the different contact information, but it's, it's usually pretty easy to find. Geralyn Arango Deeley (18:34): Okay. I just think about the parent who's going, "Wait, what?" You know, when they're getting a diagnosis or whatever. Jessica Fenton (18:39): Yeah. Geralyn Arango Deeley (18:40): So, well, yeah. Jessica Fenton (18:40): I mean, actually, you know, I, that's a great question. And I have my iPad with us, so I'm going to just do a little Google search- Geralyn Arango Deeley (18:47): Uh-huh. Jessica Fenton (18:47): ... myself and let's see what comes up. Geralyn Arango Deeley (18:49): Okay. One moment please. [typing sounds] Jessica Fenton (18:58): Okay. So I ju-just did a quick Google search. I put Intellectual Disability Services. Geralyn Arango Deeley (19:03): Mm-hmm. Jessica Fenton (19:03): Delaware County, PA. And immediately the Delaware County Department of Human Services came up, and it gets you right into their intellectual and Developmental Disability link. Geralyn Arango Deeley (19:13): Alright. Jessica Fenton (19:13): So, you should be able to do a quick Google search. Um, I would put in intellectual disability services and your county, and then the State of PA. Because there's different coun- there's a million Montgomery Counties- Geralyn Arango Deeley (19:25): Sure, sure. Jessica Fenton (19:25): ... and, within all the states in the U.S. Geralyn Arango Deeley (19:26): Right, right. And then, is this, is this service co- uh, supports coordinator a term that you'd see in more than Pennsylvania? Are they, is this the name and then the, what they do kind of? Jessica Fenton (19:39): It is, it seems to be... I have limited knowledge about that. But, from what I have researched, it seems to be fairly similar throughout the states. And like you said, some people call it supports coordination- Geralyn Arango Deeley (19:48): Mm-hmm. Jessica Fenton (19:48): ... and some people call it service coordination. So that does seem to be the current vernacular. Um, before it was supports coordination, it was called case management. Geralyn Arango Deeley (19:56): Mm-hmm. Jessica Fenton (19:56): So I'm sure there might be some states out there that still use that, or there might be some, I still have some family, um, old school families and they still say case manager instead of supports coordination. Geralyn Arango Deeley (20:05): Okay. Okay. Mm-hmm. Jessica Fenton (20:06): But most of them are either supports coordinator or service coordinator. Geralyn Arango Deeley (20:09): Okay. And do states have waivers? All states of course. Jessica Fenton (20:16): Uh, that's a great question. I believe that they do. Geralyn Arango Deeley (20:18): Okay. Jessica Fenton (20:18): But I can't speak to every state in the union. Geralyn Arango Deeley (20:22): Sure, of course. Of course. I just kind of wonder, in case there's anybody out there who's not Pennsylvania. Pennsylvania's not... I mean, we, we've got a waiting list, but, but Pennsylvania tries. Jessica Fenton (20:30): They do try. Geralyn Arango Deeley (20:31): It seems like Pennsylvania tries. (laughs). Jessica Fenton (20:33): Absolutely. Absolutely. They try. From every other state that I've ever looked into, I've seen that they do have similar waiver programs. Geralyn Arango Deeley (20:40): All right. Jessica Fenton (20:40): But always remember that your waiver program does not transfer state to state. Geralyn Arango Deeley (20:44): All right. Yeah. Jessica Fenton (20:45): So, for instance, in the State of Pennsylvania, if you move county to county, you're gonna take your waiver with you. If you move from Philadelphia County to Carbon County, that waiver's going to go with you. If you move from Delco to Pittsburgh, that waiver's gonna go with you. But if you move from Philadelphia to the State of Delaware, you lose that. If you move to the State of Georgia, you lose that. It does not transfer out of state. Geralyn Arango Deeley (21:07): Yeah. Yeah. You get back onto their waiting list. Jessica Fenton (21:09): Absolutely. And then you have to go through whatever their state- Geralyn Arango Deeley (21:12): Mm-hmm. Jessica Fenton (21:12): ... uh, process is. Geralyn Arango Deeley (21:13): That's a big deal. Jessica Fenton (21:15): Huge deal. Geralyn Arango Deeley (21:16): Because Nic will live his whole life in Pennsylvania, essentially, you know? Jessica Fenton (21:19): Mm-hmm. Geralyn Arango Deeley (21:20): Um, which is fine, but, I know his sister was feeling bad because she just got outta the Navy and was living in Virginia and moved to Maryland. She said, "I should have moved to Pennsylvania." Jessica Fenton (21:29): Oh. Geralyn Arango Deeley (21:29): He was like, "No. No, no, no." But, you know, she thought about it, and, so, you know, we don't wanna go... That's a whole different conversation but, that's just important to know is that your Pennsylvania waiver is Pennsylvania specific. Jessica Fenton (21:42): Absolutely. Absolutely. Geralyn Arango Deeley (21:43): Yeah. Jessica Fenton (21:43): And look, if you do wanna transfer state, look into their, what their waiting list is, look into their process before you move. Um, there are some states that are really good. I don't, like I said, I can't speak to other states' processes, but I do know that Delaware, the State of Delaware, does have, um, good reputation for serving their clients. Geralyn Arango Deeley (22:01): Mm-hmm. Jessica Fenton (22:01): But there might be other states out there that aren't. So look at what, uh, that other state has to offer, how long their waiting lists are, and then you can balance the, the pros and the cons and see from there. But, you're, you're, but, you know, it's a pretty good bet to move county to county and try to stay in PA. Geralyn Arango Deeley (22:18): Yeah. Well- Jessica Fenton (22:18): If, if you have the, if you have the Cadillac of waivers, you really wanna [inaudible 00:22:21]. Geralyn Arango Deeley (22:20): You really wanna stay. (laughing). Yeah. Jessica Fenton (22:22): Yeah, yeah. Geralyn Arango Deeley (22:23): And I'm driving a Cadillac right now- Jessica Fenton (22:24): (laughs). Geralyn Arango Deeley (22:25): ... so I'm gonna keep my car. Um, (laughs), we're keeping this one. Um, alright, so, and then, the, so the waiver that's kinda common. An ISP, first, is that another, you know, acronym that would be what you'd hear across different states? Jessica Fenton (22:42): I believe it is as well. Again, I, I have very limited knowledge, but from different things that I've looked up when I've reviewing policy, I would see something from Minnesota or something from Oregon. So, anything that I've ever come across, they do say ISP, so I do believe that that is a pretty common, um, vernacular. Geralyn Arango Deeley (23:02): Okay. Okay. Okay. And since, we've got this one that shows up either a-after the I, the IEP is over or during, um, and, like I said, as, as a, as a parent and as a former classroom teacher and even as a professor, um, when I talked about an IEP, we talked about goals and objectives. Jessica Fenton (23:21): Mm-hmm. Geralyn Arango Deeley (23:23): And now when I look at an ISP- Jessica Fenton (23:25): Mm-hmm. (laughs). Geralyn Arango Deeley (23:25): ... my mind is still going goals and objectives and my eyes are reading outcomes. And so, my question there is, as we are, you know, working on an I- an ISP, and ours, we are working on it next Friday, actually at this time, um, it's our annual. What's the difference as, you know, what are we, how are we to read this differently and what is the areas of overlap actually too? Jessica Fenton (23:52): Yeah. Um, it's, it's tricky. Um, a lot of supports coordinators that have been around for a long time still have trouble with it. Jessica Fenton (24:00): A lot of, uh, direct support service professionals have trouble with it. Um, outcomes, goals are part of outcomes, so you, uh, a support person might work on specific goals with someone like Nick in order to reach his outcome. So the outcome is the overall thing you want to happen and the goals are what get you there. So Nic's outcome could be something, uh, and this is, you know, just overly simplified, but, you know, Nic wants to live independently in his, um, home- Geralyn Arango Deeley (24:35): Mm-hmm. Jessica Fenton (24:36): ... and be successful. So that's the overall outcome, but his goals are still going to be money management and community integration and socialization and household chores. Geralyn Arango Deeley (24:47): Mm-hmm. Jessica Fenton (24:48): Uh, doctor's appointments. Geralyn Arango Deeley (24:49): Right. Jessica Fenton (24:49): He's still going, he's going to need to work on all those goals in order to, for him to achieve living independently. Geralyn Arango Deeley (24:55): Okay. So, uh, it's almost like a, an IEP. A goal and an objective is now a goal, is now an outcome and a goal. Jessica Fenton (25:02): Yes. Geralyn Arango Deeley (25:03): So the word "goal" moves. Jessica Fenton (25:04): Yes. Geralyn Arango Deeley (25:04): All right. Jessica Fenton (25:05): But, I mean, stay tuned, Pennsylvania, because that might change. Again, uh, word on the street is that we might be going back to goals. I have no idea if that's going to happen or not, but I know our system is changing. As supports coordinators, we work in something called HCSIS. HCSIS is going away. Um, it's been around for 20 years. Geralyn Arango Deeley (25:25): HCSIS is going away? Jessica Fenton (25:26): HCSIS is going away. Geralyn Arango Deeley (25:27): Where is it going and who's gonna take its place? Jessica Fenton (25:29): I [inaudible 00:25:30] I know. I hope we can still access it. Geralyn Arango Deeley (25:31): And then what's HCSIS? Tell us what's HCSIS? Jessica Fenton (25:32): Okay. Geralyn Arango Deeley (25:32): Yeah. Jessica Fenton (25:34): So HCSIS is, um, Home and Community Information System. It's HCSIS. Home and Community Services Information System. That's what HCSIS stands for. And HCSIS is the online system where all your supports coordinators put in their service notes about what they did with you for the day. Supports coordinators have to do monitorings. Um, very important. Make sure your, your supports coordinators are monitoring your services so that they can ensure that you're getting good services. And that is part of the waiver. So I've heard that, you know, sometimes some people aren't getting monitorings, and if you're not getting monitorings, you, you definitely should. (26:09): But, um, back to HCSIS. Uh, we put in, that's where the, uh, ISP is. That's where the ISP goes, the monitoring goes, all the service notes. The puns that we talked about, that state link list, that's in HCSIS. Geralyn Arango Deeley (26:21): Mm-hmm, mm-hmm. Jessica Fenton (26:21): So they're going to be replacing HCSIS with something called ECM, which is Enterprise Case Management. Geralyn Arango Deeley (26:27): We love an acronym. Jessica Fenton (26:28): Don't they? Geralyn Arango Deeley (26:29): Man, oh, man. ( laughs) Jessica Fenton (26:30): It is so confusing and I am a little bit tongue tied and I have, yeah. Geralyn Arango Deeley (26:36): Hmm. ECN, okay. Jessica Fenton (26:36): ECM. Geralyn Arango Deeley (26:37): ECM. Okay. Jessica Fenton (26:38): Enterprise Case Management. So now hopefully, that is supposed to streamline the St- State of Pennsylvania. This way if you're in multiple systems, people can see, um, the information, that there's not, um, somebody who's involved with the children and youth program. So their system is completely different than our system than, so they can go in and then just find out, um, demographics, for instance. It's just important to streamline things- Geralyn Arango Deeley (27:04): Mm-hmm, mm-hmm. Jessica Fenton (27:05): ... across demographics so people have the right contact information and so on. So it, it's supposed to really streamline, but that's what's coming down the pike. So I've heard ramblings that they're gonna be going from outcomes back to goals, but I don't, I don't know- Geralyn Arango Deeley (27:20): Okay. Jessica Fenton (27:21): ... if and when that's going to happen. Geralyn Arango Deeley (27:22): And what it's going to mean. Jessica Fenton (27:24): I don't know that either. Geralyn Arango Deeley (27:25): Okay, 'cause again, it's, it's- Jessica Fenton (27:25): I think that- Geralyn Arango Deeley (27:26): ... a word from the IEP that came over to the I, is in the ISP but it's different. Jessica Fenton (27:30): Yeah. Yeah. I mean, I think that, again, and, and, and it might not happen. I, I think that different people have different ideas, but what you are speaking to is how difficult it was to wrap your brain around an outcome. Geralyn Arango Deeley (27:39): Mm-hmm. Jessica Fenton (27:40): And I think that's why they're talking about going back to goals, because it's really, it is really hard for the, you know, everyday person to wrap your mind around the outcomes versus goals. I think goals are more simplified. They're easy to understand and they're easy for our guys to understand. So they're more straightforward. Geralyn Arango Deeley (27:56): Mm-hmm. Jessica Fenton (27:56): So I think that's why there are s- there is talk about going back to goals. Geralyn Arango Deeley (28:00): And it's also familiar for families. Jessica Fenton (28:02): It is. Geralyn Arango Deeley (28:02): Because when they think, I mean, it's not academic in the s- uh, that kinda stuff, but it is the, the term that meant what it meant there and it's a little more like what it's gonna mean here- Jessica Fenton (28:12): Yes, yes. Geralyn Arango Deeley (28:13): ... I guess, minus the academics. Jessica Fenton (28:15): Yes, so, uh, stay tuned. Geralyn Arango Deeley (28:18): All right. Jessica Fenton (28:18): Um, any advocacy agency, self advocates out there, you know, tell them you want the goals back if, if that's what you think. Um, but fingers crossed. Geralyn Arango Deeley (28:28): Okay, well, and you have any idea, like, a timeframe? Jessica Fenton (28:31): Timeline. I don't. I don't. And like I said, I, I didn't read anything about that. That was rumblings that, that I heard through the grapevine. Geralyn Arango Deeley (28:39): Okay. Jessica Fenton (28:39): So I haven't come across anything that they said that ECM is going to be implemented. But I'm assuming that the ISP, everything's gonna look a little bit different. So, um, there's gonna be a huge learning curve, and where I was the first class that was trained in HCSIS when it first came out. Um, I was hired with the county, um, September of 2000 and HCSIS was implemented shortly after that, so I, I really was the very first class, at, at least in Delaware County, um, that was trained on that- Geralyn Arango Deeley (29:06): Mm-hmm. Jessica Fenton (29:07): ... um, I believe, in the region. And that's, so this has been around for 24 years. So it's, even people that have been around forever, now that we're gonna learn a new system, it's gonna be tough. Geralyn Arango Deeley (29:16): Mm-hmm. Jessica Fenton (29:17): So just, um, be mindful of that. When the new system comes out, there's gonna be a (laughs) Geralyn Arango Deeley (29:22): (laughs) Jessica Fenton (29:23): ... There's going to be, you know, a few, uh, a little bit of a rocky road until we all learn, but we will get through it together. Um, and hopefully it seems like it's, they're trying their best to have everything streamlined and be straightforward. Geralyn Arango Deeley (29:36): Mm-hmm. Jessica Fenton (29:36): And hopefully the new supports coordinators coming in will find it easier than na- in, in navigating something like HCSIS. So then this way, they'll be more available to you instead of trying to navigate the system. Geralyn Arango Deeley (29:48): Okay. We are gonna stop this podcast at this natural stopping point so that you can go, I don't know, let the dog out or get a drink of water or take a walk or whatever and come back for part two of this podcast, 'cause it's so much information that I kinda wanna break it up for you listeners. (30:08): So I wanna learn more about getting the most out of the expertise of a supports coordinator, and I feel like that's happening and I thank you, Jessica, for hanging in for one more episode and to learn more about the supports coordination organizations and, and that sort of generic whatever, but I also wanna kinda learn a little bit more about your story on our next episode and, um, how you, in that position of supports coordinator as well as a supports coordination organization, can be of help to families. (30:41): And so listeners, I hope you will come back for part two, but if you don't, I hope that was a whole bunch of information, 'cause it kinda was, and I need to go let the dog out and go get a drink of water and come back. Thank you so much for spending time with us for part one of today's episode with Jessica Fenton, Director of Miracle Works, on Our Parallel Paths: A Future for Our Loved One with a Disability and For Me! I hope you will like and follow the podcast, share it with family and friends, and I really hope you will return to listen and listen to the next episode. Listen to all the episodes and learn from more stories of people like you and me and our loved one with a disability on Our Parallel Paths. Just so you remember, you're not alone and I'll see you next time.