ARISE - EFR
The theme of the podcast is independent living and advocacy for people with disabilities.
ARISE - EFR
Supporting Families Through Disability Services
In this episode of the ARISE-EFR podcast, host Bruce Drake sits down with Karen Adams, Resource & Family Reimbursement Specialist, to discuss her journey as both a parent and advocate in the disability field. Karen shares how she came to work at EFR, her personal connection to services through her son’s diagnosis, and the workings of the Family Directed Supports program — a reimbursement program for disability-related expenses for individuals living at home. They explore how families can navigate allowable vs. non-allowable expenses, the advocacy process, referral services, and the importance of empowering families to self-advocate and trust their instincts.
This is the Arise Exceptional Family Resources podcast, with your host, ceo, bruce Drake.
Speaker 2:Hi everyone. I'm Bruce Drake, the CEO at Arise and Exceptional Family Resources, and I am your host for today's Exceptional Talk on Disabilities. I'm really excited to be joined today by our resource and family reimbursement specialist, karen Adams. Welcome, karen, hi everybody, very nice, thank you. So, karen, why don't we start? Why don't you tell us a little bit about yourself?
Speaker 3:Well, I'm a West Jenny grad. I'm a Brackport alumni. We have two children. Our oldest is now 28. Our youngest is 27. He has significant autism. I came to EFR when our son was about two and a half years old, working in a different field, and we were looking to gain access to services and school support for preschool, and that led to a part-time job as an advocate, and I've been there 22 and a half years and here I am.
Speaker 2:So never any doubt, the mission at EFR was really personal to you and what you do.
Speaker 3:The mission at EFR was very personal to me Back 23, 24 years ago, before I came to EFR and I was getting services for our son. Efr was the best of the best and that's why we seeked it out. We wanted to make sure that we had the most knowledgeable people that we could find to help us gain the services for our son, and it's worked out great for him.
Speaker 2:So you said you were in a different field before then. What were you doing before that?
Speaker 3:I was in the restaurant business. I was the manager of the Dry Dock Grill.
Speaker 2:Excellent when I met my husband, and an easy transition into what we do.
Speaker 3:Yeah, well, by trade I'm a recreation therapist, so I worked for another agency years ago and then it just kind of morphed and full circled and right back where I started. So it's kind of it's great, though it's a great agency.
Speaker 2:Excellent. Do you mind if I ask how your son's doing now?
Speaker 3:Frank is doing great. So we went from a 4410 preschool, which is a very intensive supportive preschool. He did ABA services, then he went into integrated school some of the local schools he was at and then we went to a BOCES program. From there he went to residential school because he was having significant behavioral challenges that we could not support in the house or at school. And when he finished there he went into an IRA. He's under the UCP helm and he resides up in Boonville with five other gentlemen and we moved up to Forestport to be close to him and now he's living his best life and he's just the king of the castle.
Speaker 2:That's fantastic, and I'm sure he's happy to be out of the house. Oh, absolutely Excellent. So we know your connection to the field and to working with people with disabilities is certainly very personal, but you oversee a really interesting program that I don't think a lot of people know about or really fully understand. Why don't you tell us a little bit about the program that you oversee?
Speaker 3:So Family Directed Supports is a reimbursement program for people that live at home with a family member. We only serve Onondaga County at this point and it's really about reimbursing families for things that are disability related. For example, if children want to take swimming lessons but they really need private lessons because their focus is off and they really need that higher level of support, we can reimburse a family for that. We can reimburse for specialty camps, we can support families with different things that they may need to support their loved one at home Therapeutic horseback riding lessons, you know, after school integrated things we can do sometimes. So it's really a great program. Opwdd eligibility is the requirement. You do not need a care manager, you do not need a CCO. So the criteria is OPWDD eligibility and you have to live at home with a family member.
Speaker 2:So it's a really interesting program. Why would OPWDD pay for those things?
Speaker 3:Well, I think they've come to realize that we all should keep our family members home as long as we can to support them.
Speaker 3:As parents, we know our children and family members better than anyone and of course it's more cost effective to keep people at home members better than anyone and of course it's more cost effective to keep people at home.
Speaker 3:So we're trying to ease the financial burden that families have for different things that are really connected to a person's disability that you wouldn't otherwise be paying for. You know, some of the things that we don't cover because it's a, you know, a responsibility of any parent would be typical things like after school child care that's not disability related things like car seats. You know there's other programs in the county that support things for car seats and we have those referrals. So the other hat that I wear at efr is the information and referral. So oftentimes when we get called, can you help me get this or I need this for my family member or child, I'll say, well, we can't do that with this program, but the information and referral program and I can make a referral to another agency or a local business that may be supporting things that they need that they can get without any cost.
Speaker 2:So is that one of the difficulties of the program is helping families understand what's an allowable cost versus what's not an allowable cost.
Speaker 3:Yes, and there is a list that OPWDD has provided that outlines things that are allowable and things that are not. But some of the things on the list, like anything that gets into a gray area, some things- Can you give us an example?
Speaker 3:Sure. So if they're looking for a camp, for example, we just had this conversation last week with our OPWDD representatives that oversee our funding and they wanted to go to a camp for a week. And they came back and they said, well, are they eligible for extended year schooling? And I said, well, I don't know. That's never been something that we've talked about before. So basically the two entities cannot cross over.
Speaker 3:So if somebody is eligible for the six-week extended year program for special ed students that involves typical therapy and special ed services they can't opt out then and go to a camp for a week. The program runs six weeks typically for any school district or BOCES program. So if they were to pick a week before or after the six-week block, we're good to go, and if they're not eligible for extended year, then they're good to go as well. So we always have to be very mindful of what other state and federal dollars are paying for, something that the person needs. That we cannot overstep, I guess, is the best way to put it, Just like the services. You know, if people are, if a child's homesick, well that's still the responsibility of a parent to provide child care. You know, we can't pay for that Same thing with the other services that we do the waiver services.
Speaker 2:Now, Karen, you and I have worked together for a little over six years now, and I know you're an excellent advocate. Has it been six years. I know it seems shorter than that this only seems like a month. I know you're an excellent advocate, so what role do you play in that? When a family is looking for support or needs a piece of equipment that they feel that they're eligible for, but maybe OPWDD has a separate feeling, what is your role in that?
Speaker 3:Well, I feel that as an agency, we're always supposed to be supporting families in the best way that we can. So if there's something that they're asking for that is not on the non-allowable list, which I call the no-fly list, if it's not on there, then to me it's always it's a maybe. So it really is a matter of getting enough criteria together and enough clinical justification. Usually it's an item Like I just got asked for something just this morning called a hug box. Never heard of it. I have no idea. It was a quick email from a parent and said I heard this from another parent and I heard that you can pay for it. I said well, I'm not sure what that is, but here's the checklist of what you need to have your clinician describe in a letter. If you can find the support and connect with the disability and send me a link of how much it is and it makes sense, we'll certainly submit it and let's see what happens.
Speaker 2:Submission. So are you the one who decides if something gets submitted, or is there another process? And who ultimately says yes or no to an item?
Speaker 3:Well, there's several steps to that. So the application from OPWDD is standard for all agencies that have this funding. So they have to fill out the application. If they have a care manager, they're responsible for helping them do that. And if there's other criteria, that has to come. So there's a clinical checklist of items that have to be filled out.
Speaker 3:You know what's the child's disability? I have knowledge of working with a child. I provide this type of therapy. This type of equipment would be beneficial at home, and here is why. So, as long as the criteria is there and it's signed by a New York State clinician, that's part of the criteria. So then we usually involve a care manager or anybody else working with a child, saying okay, you know what, do you see? Do you think this is beneficial?
Speaker 3:I try to load up pretty heavily on the criteria. Then, when we have it all in place and it has to be responsible for, you know cost effectiveness. For example, you can buy a door alarm for $200 and you can get on Amazon and you can buy 18 of them for $20. So we have to be cost effective. That's another thing they look at. So when I receive something, if it's pretty standard on the up and up I'm like, okay, looks great, put the stamp on it, put it in my pile to review.
Speaker 3:We have a committee that we meet once a month that everybody has to review to make sure that we're fitting the criteria and this is something that we can support. And after they give the nod, yep, okay, looks good Karen. Then I fill out something called our tracker and then it all goes up to OPWDD, to our regional office. They look it all over and they read everything and they want to make sure that we have it exactly right and they give the yes, the no, the whoopsie. We want more information on X, y, z. I provide that as quick as I can to try to get the families as much as we can get them.
Speaker 2:That's great. That's great and it is a great program in that, you know, I imagine being a family member or a parent of an individual with a disability is hard enough without having to worry about the finances, the financial ramifications of supporting that child at home. So it's great whenever we can say yes, and I know that's your attitude.
Speaker 3:We always want to say yes, but sometimes we can't.
Speaker 2:Excellent. Do you have any success stories that maybe you can share of a family or an individual? Yes, as a matter of fact.
Speaker 3:I mean there's a lot over the years, of course. But there was one gentleman he's I don't know, maybe 40-ish I'm guessing and he often goes to two summer camps and he lives at home with a family member. And I mean they really need the financial support, there's no question about it. So when they kind of changed the rules a couple years ago, they said well, you can't attend this camp because it's not, it's not certified under the Department of Health. It was run by a church or something. I can't remember what the situation was.
Speaker 3:So I was working with his support person, the DSP, and she said to me well, and I said, well, what else are they doing? What else can we help the family with that maybe they're paying for that they don't realize that we can pay for, which would then free up family funds that they could then pay for it themselves. Oh, and I always call it like let's go in the back door, let's figure out what else the family's spending money on, that we could maybe help them. So, as it comes out, she said, well, there's a church that pays for them to go to this program. And she says, maybe I can ask them to pay for the other program, then you can pay for that program, and I think you know who I'm talking about. So it was really, it was just so great. So he came in the office and he handed me a little thank you note and it was so sweet, and you know, I mean those are the things that we're here to do. We're here to help families. We always want to say yes.
Speaker 2:Excellent.
Speaker 3:We do always want to say yes, so you talked a little bit about what your role is with that. Sure, that's a pretty wide scope. So, basically, any call or email or anything that comes in through the agency you know, gee, my neighbor's dog is barking, can you help me with that? Or I need housing, or you know, I have a child that's four that just got diagnosed. I don't know what to do. So any kind of information that comes in, any referral that we can make. You know, we really go the full length to try to give families different referrals so they can follow up on themselves. We're trying to empower families. You know, not do things for them, but empower them to move forward and to be an advocate, because this is a lifelong thing. They're going to always have to be an advocate for their family member. So that's always what we're trying to do.
Speaker 3:And there's different support groups and online things. I mean, there's so much more now with the access to the Internet than when even our son was two and three. I mean, for example, when I came to EFR we had one computer per office and there was four of us in an office. I mean, we weren't even computerized and that wasn't that long ago, it was 25 years ago. So things have really, really changed. I don't think we see as much in-person support groups as we used to. They're still out there, but a lot of things, I think especially from COVID. There's a lot of things now that we do via Zoom or electronically, and it really is very supportive to families. I think they really appreciate that referral. So we're good.
Speaker 2:So when you talk about trying to empower because it's a lifelong thing that they're going to deal with is their family member with a disability what do you mean? How do you help empower them?
Speaker 3:I always say to families listen to your gut feeling, because if somebody's telling you something and it doesn't feel right to you whether it's a professional, another family member, a friend, a teacher, a physician you know you have to go with your gut feeling and if something doesn't feel right, you really need to listen to yourself. When our son was young, that was one of the best pieces of advice that I got from. I called a veteran parent who was ahead of us in the game. That's what I say. And you know, I think we all have to do better for the next group behind us. I think we all have to do better for the next group behind us, and I hope that we've done that. As a family, you know, we've tried to make things a little bit better, a little more accessible, and that's what we're all supposed to be doing helping each other.
Speaker 2:So two great programs. You do a fantastic job. For those of you who don't know Karen, she's probably the best advocate I've ever met. How do families access these programs? So if they're sitting there listening and they're hearing all about this and say this is perfect for me, how do they get access to these programs? They can email us.
Speaker 3:They can call our office. We have an info email. I also have my email, our main office number or my direct line. Can I give that? Sure, go ahead. 315-807-0079 is my direct line. My email is kadams at contactefrorg line. My email is kadams at contactefrorg. So that would be K-A-D-A-M-S at contactefrorg and we're certainly willing to talk with anybody about anything. Even if we can't do it, we can make a referral to, hopefully, somebody that can. I mean that's the business that we're in.
Speaker 2:Karen, you're the best. Thank you so much for joining us today. You're not so bad yourself. Yeah, that's true. Ladies and gentlemen, that was Arise and Exceptional Family Resources Resource and Family Reimbursement Specialist, karen Adams. As always, thank you all for listening and we hope you join us next time as well. Have a great day.
Speaker 1:This has been the Arise Exceptional Family Resources podcast with CEO Bruce Drake, recorded and produced at the WCNY Public Broadcasting Studios. For more information, visit our website at contactefrorg. You can also follow us on Facebook. Thank you for listening.