ARISE - EFR
The theme of the podcast is independent living and advocacy for people with disabilities.
ARISE - EFR
Understanding the TBI Waiver: Independence in Action
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What is the Traumatic Brain Injury (TBI) Waiver, and how does it help people live independently? In this episode, Bruce Drake sits down with program expert Danielle Durkin to break down eligibility, services, and how this Medicaid-funded program supports individuals in staying in their homes and communities.
This is the Arise Exceptional Family Resources Podcast with your host, CEO Bruce Drake.
SPEAKER_02Hi 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. Really excited today to be joined by our lead RRDS and the TBI waiver program, Danielle Durkin, who is here to discuss our traumatic brain injury waiver program. Welcome, Danielle.
SPEAKER_01Thank you.
Danielle’s Path Into Disability Work
SPEAKER_02So, Danielle, I always like to start these off by just asking people to say a little bit about themselves, kind of so the audience can get to know you a little bit. So why don't you tell us a little bit about who you are?
SPEAKER_01Okay. So I was born and raised in Syracuse, grew up here my whole life. I've been married for almost 10 years now, and um I live in Westvale and have two dogs.
SPEAKER_02Two dogs. What are their names?
SPEAKER_01Um Morty and Lando.
SPEAKER_02And what kind of dogs, dogs are they?
SPEAKER_01Morty is a black lab bloodhound and boxer, and then Lando is an Anatolian shepherd and husky.
SPEAKER_02That's I I actually have a dog named Dixon. That's a black lab bloodhound mix.
What The TBI Waiver Does
SPEAKER_01You do, yeah. They probably look very similar then.
SPEAKER_02Very interesting dogs. So, Danielle, why don't you tell people how you got into the field of working with folks with disabilities?
SPEAKER_01So I graduated from Syracuse University with a degree in public health and social work. From there, I did an internship at a social day program for people with Alzheimer's and dementia. And after that, uh I got into the TBI waiver program as a service coordinator.
SPEAKER_02Why don't you tell people what TBI stands for? Aaron Ross Powell, Jr.
SPEAKER_01Oh sorry, it's a traumatic brain injury.
SPEAKER_02Trevor Burrus, Jr. No, that's okay. And why don't you tell folks a little bit about the TBI waiver program?
SPEAKER_01So the TBI waiver program has been around for many, many years. The goal of the TBI program is to keep people in their homes and in the community and as independent as possible.
SPEAKER_02Okay. So when you say that we're going to keep people in their homes and as independently as possible, the the people that you work with, are they currently in nursing homes? Are they currently living on their own, or how how does that work?
SPEAKER_01It's definitely a mixture. We have people that are coming out of hospitals that just acquired their TBI. We have people that are in nursing homes that would like to come home. And we do have people, you know, living with their families that just need a little extra help in staying home.
SPEAKER_02So, Danielle, what what makes somebody eligible for the program?
SPEAKER_01So for the TBI waiver, you have to be between the ages of 18 and 64 upon enrollment. Um, and you have to have Medicaid coverage. This is a Medicaid-based waiver, and you have to have a diagnosis of a traumatic brain injury. Um, so we have a nurse evaluator on staff who reviews all the medical documentations and determines if it is a traumatic brain injury and if they can move forward with the program. And you also have to be nursing home level of care. So our nurse evaluator will go out once they're picked up by a service coordinator, which we can talk about in a little bit, and she will determine if they are nursing home level of care.
SPEAKER_02Trevor Burrus, Jr. So what is what does that mean to be nursing home level of care?
SPEAKER_01Aaron Ross Powell So the nurse evaluator um completes a uh assessment. It's called a uniform assessment system. Okay. It goes over, you know, physical, mental, you know, their ADLs, IADLs. So ADLs are ADLs are uh activities of daily living. Um so light housekeeping, personal care, uh meal prep, um so she'll go over that with all of the participants, and then it computes a score, and the participant has to be a score of five or higher in order to be on the waiver.
SPEAKER_02Aaron Powell Okay. So essentially somebody has to be eligible to live in a nursing home, and this is a program that allows them to live in the community instead?
SPEAKER_01Yes, correct.
SPEAKER_02All right. So so what role does uhise exceptional family resources play in the process, right? So I know that we do the evaluations to determine if somebody is eligible, but are we the folks who are actually providing services?
SPEAKER_01So we're called the Regional Resource Development Center, and we are the ones that get all of the referrals for the TBI waiver.
SPEAKER_02Um for what region? So when you say we get all the referrals for what are we talking about?
SPEAKER_01We are called the Syracuse region, and we are in St. Lawrence, Jefferson, Lewis, Madison, Oswego, Oneida, Onadaga, and Herkimer counties.
SPEAKER_02That's a geographically, that's a pretty big areas. Yep. That that must be difficult in and of itself. How do you deal with somebody who's what would you say? Did you say St. Lawrence? I mean, how do you how do you how do we support somebody who's in St. Lawrence County?
SPEAKER_01So we do have a few agencies up there that provide service coordination. Um and then a lot of the participants up there receive consumer-directed services that can help them in the home. Unfortunately, for the waiver, we don't have any home and community support services up there at this point. Okay. Um, but you know, we're getting, you know, new providers all the time. So hopefully we can definitely expand that area at this point.
SPEAKER_02So I I actually think I cut off one of your answers when I asked about the geographic stuff. So our role in this, uh Horizon EFR's role in this, right? So we we do the evaluations, and then for our region, how do we support people in the TBI waiver program?
SPEAKER_01So once our intake coordinator goes out and does an intake, we put them on a referral list, and the referral list goes to the service coordinator. So the service coordinators are the one who develop your plan for the TBI waiver. They help you get all your services and they help you, you know, get back into the community or stay in the community.
SPEAKER_02And everybody has to have a service coordinator.
SPEAKER_01Yes, that's the one service that you have to have on the traumatic brain injury waiver is service coordination.
SPEAKER_02And who do the service coordinators work for?
Key Services Like Home Mods
SPEAKER_01So we work right now, traumatic brain injury work, we work with 33 different providers where they can provide service coordination, home and community support services, community integration counseling, independent living skills. Um we have eMods available once you're on the waiver, excuse me, environmental modifications.
SPEAKER_02Um What do you mean environmental modifications?
SPEAKER_01So if someone um you know needs some doorways widened, or if they need a ramp, a more accessible bathroom, the TBI waiver can provide funds for that.
SPEAKER_02So I just want to make so somebody gets determined to be eligible for nursing home level of care.
SPEAKER_01Correct.
SPEAKER_02They get assigned a service coordinator.
SPEAKER_01Yes.
SPEAKER_02And then because they have a desire to live as independently as they can in the community, uh they can receive these services. And some of those services might be modifications to the home. Do they have to own the home or can they rent the home, or does that matter?
SPEAKER_01Uh they usually have to own the home, and then obviously if they are renting, they would just have to get permission from the landlord. Yes.
SPEAKER_02So they somebody has to utilize a wheelchair. So now in order to stay in the house, we can widen or we can help find someone or pay for someone to widen the doorway so that they can continue to live in the house.
SPEAKER_01Yes, we have providers, yep, that uh the service coordinator would work with who would do the assessment, do all the work. Um so the service coordinator would write that in the plan that they would need an environmental modification.
Costs, Barriers, And First Steps
SPEAKER_02Wow. I mean it's it's it's a great service. Yes. Why does this service exist? Why don't people just go to the nursing homes?
SPEAKER_01Uh the nursing home um is obviously a higher level of cost. Okay. Um so keeping people at home does lower the cost for people. Um and I think a lot of people do want to live at home and in their community and try to be as independent as possible.
SPEAKER_02Yeah, I I know just from personal experience with my dad, there was there was no way that he was going to a skilled nursing facility. We had to do a number of things uh to to make sure that he can continue to live in the community for as long as that he wanted. So it that's it sounds like a really great program. So how how many people do we currently support?
SPEAKER_01Uh we currently support uh 270 uh participants.
SPEAKER_02Through the eight counties in New York State? Yes. Okay. And then you talked about different providers. So we're Arise EFR, so you have the Department of Health, and then Arise EFR works with the Department of Health, and then we're kind of the go between between the Department of Health and the different providers, is that right?
SPEAKER_01Yep. So the Regional Resource Development Center is what we call ourselves, and we approve all of the plans that the service coordinators submit to us. So all of the services they're justifying is what we approve.
SPEAKER_02Okay. And then how many different providers do we work with?
SPEAKER_01Oh, we work with 33 right now.
SPEAKER_02Okay. And do all the providers provide all the services?
SPEAKER_01They don't. They can pick and choose what they they provide.
SPEAKER_02So if I'm somebody who's receiving been approved for the service and I'm receiving the service, it's my job to find the provider that I feel most comfortable with and provides the services that I want?
SPEAKER_01Yeah, so this is a program of choice. Um, so the participant can choose who they want to work with, who they don't want to work with, and that can be changed at any time as well. So if you know your service coordinator and you just aren't clicking, you can interview other service coordinators.
SPEAKER_02Aaron Ross Powell Are services readily available or does it depend on where you live or Yeah, it definitely depends.
SPEAKER_01I mean, obviously in the rural areas, there's less services available. Right. Um, like you said, St. Lawrence, Lewis, um, Herkimer as well. There's definitely less l less services out that way.
SPEAKER_02Aaron Ross Powell And people can combine services?
SPEAKER_01Yep. So you can have as many as you want. So you can have home and community support services, you can have independent living skills.
SPEAKER_02So let's let's talk about because you talked uh I was most fascinated by the eMods, and I think that's a great program, but what are some of the other most frequently used services, right? So everyone has to have a service coordinator. Uh we talked about eMods. What are some of the most frequently used services?
SPEAKER_01Um The Home and Community Support Services, that's PCA level two, personal care level aids that come into the home. Okay. Provide lighthouse keeping, meal prep, personal care. Um that's obviously the most popular one we have.
SPEAKER_02Aaron Ross Powell And those and those aids are employed by the providers?
SPEAKER_01Correct.
SPEAKER_02Okay.
SPEAKER_01Yes.
SPEAKER_02And who gets to choose? Does the individual get to choose who their aid is going to be, or do they just work with the provider and the provider provides?
SPEAKER_01Trevor Burrus They work with the provider for HCSS. If they did have consumer directed services, which we do have people who are in the more rural areas, um they would be able to choose their own staff for CDPAP.
SPEAKER_02Okay. And so what are some of the other more frequently used services?
SPEAKER_01We have assistive technology, so um a lot of our participants use a personal emergency response system in case of falls.
SPEAKER_02Is that help I've fallen and I can't get up? Is that what that is? Yes, correct.
SPEAKER_01Yep. We also have structured day programs which allow people to get out into the community, you know, talk with their peers every day.
SPEAKER_02So a structured day program, uh sorry to cut you off. A structured day program uh would be a place where people who are eligible for the program go together during the day.
SPEAKER_01Yes.
SPEAKER_02Uh potentially work on skills. I would think there would be some skill development, certainly socialization.
SPEAKER_01Yep, they provide meals. Um some of the day programs are considered without walls. Um they're out in the community the whole time. And then there's other programs where they're at the facility the whole time.
SPEAKER_02That's great. And those are those, and I know this isn't your area of expertise, but or I don't think it is, are those plentiful? Are there a number of programs for people to choose from?
SPEAKER_01Yes, there is. I actually got my start in social day programs. So yes, I'm a big I'm a big fan of social day programs. Excellent. Um I s my first internship was um at a social day program, and I moved up and became the director. And then um that wasn't waiver-based, but um when I started working on the waiver, I became a director of a structured day program for the waiver as well.
SPEAKER_02Got it. So if I'm somebody who's looking to choose a provider, is the best way just to do internet research? Is there some other mechanism for doing that? So how do I choose who's the best provider for the project?
SPEAKER_01We have a provider list that we provide to all the participants, and we encourage them to interview as many providers as possible to see what their best fit would be.
SPEAKER_02Does it cost anything for people to participate?
SPEAKER_01This is a Medicaid-based waiver, so as long as they have Medicaid, there is no cost.
SPEAKER_02So we'll widen your doorways as long as the price is reasonable for the work that you're getting done at no cost to you, so you can continue to live independently in the community.
SPEAKER_01Yes.
SPEAKER_02That's great. Do you see any theme to the struggles that people might have as they uh utilize the program? Are there common other than I would imagine keeping Medicaid certified?
SPEAKER_01Correct. And that's something the service coordinator can assist with. They'll help with the research every year. Um, if people have support in their home, sometimes it's hard keeping staff in the home.
SPEAKER_02Sure. Uh so if if I'm out in the community and I'm listening, if I'm one of the millions of people who are listening to this podcast, and I I feel that this program might be good for me or one of my family members, what's the first step that I take?
SPEAKER_01So you would call um our office and we would get medical documentation from your doctor, and from there um we would give it to our nurse, and after that we would set up an intake.
SPEAKER_02Fantastic. Do you happen to know the number?
SPEAKER_01Yes. Uh you can give me a call at 315-671-3097.
SPEAKER_02Danielle, thank you so much for joining us today. You did fantastic. It is a it is a wonderful program and really provides a level of independence that that people would not be able to obtain without you. So really well done. Uh ladies and gentlemen, that was Arise Exceptional Family Resources lead RRDS in the TBI waiver program, Danielle Durkin. As always, thank you all for listening, and we hope you join us next time as well.
SPEAKER_00This 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 contactefr.org. You can also follow us on Facebook. Thank you for listening.