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How To Build Amazing Self Direction Programs That Actually Work

This episode of Home Care Heroes and Day Service Stars features Melody Ray, Executive Director of ReSOARces, a nonprofit in Kentucky.  Melody discusses self-direction programs for individuals with intellectual and developmental disabilities. These programs enable participants to direct their care and lead more fulfilling lives.

 



The episode begins with host Ken Accardi providing a historical perspective on disability services, highlighting the shift from institutional care to programs that support individuals in their homes and communities. Self-direction programs represent a significant evolution, allowing participants or their authorized representatives to manage their care and services according to personal preferences.

Melody explains that self-direction, referred to as "participant-directed services" in Kentucky, is a Medicaid waiver program aimed at enabling individuals with disabilities to live independently. Participants can hire and manage their own caregivers, providing greater consistency and choice in their care. However, the complexity of managing these programs, which requires participants to take on responsibilities similar to running a small business, presents challenges.

The conversation highlights the administrative burdens faced by participants, such as hiring and vetting caregivers, conducting background checks, managing compliance with Medicaid regulations, and maintaining essential records. Case managers often struggle to support self-directed participants due to the extensive administrative work involved, leading some agencies to turn away potential participants.

Melody describes how ReSOARces addresses these challenges through its "community guide" service. Community guides assist participants by handling administrative tasks such as recruiting and training caregivers, managing compliance, and ensuring timely submission of required documents. This support streamlines the process, allowing participants to focus on their quality of life. ReSOARces also developed tailored processes to accommodate variations in requirements across different fiscal management agencies (FMAs).

The conversation underscores the benefits of self-direction programs, such as personalized care and greater independence, while acknowledging the difficulties in implementation. Melody emphasizes the importance of community guides in overcoming these barriers and enabling participants to succeed in self-directed care.

Ken and Melody discuss the broader implications of self-direction programs, noting their availability in various states and the growing demand for disability services. They also highlight the financial viability of these programs, citing reimbursement rates and the potential for organizations to "do well by doing good."

The episode concludes with Melody sharing insights on the growth of ReSOARces, which now supports over 60 participants with a team of dedicated community guides. She encourages listeners to persevere through challenges, emphasizing that impactful work will naturally lead to growth and recognition.

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For those interested in learning more about Resources or the self-direction model, Melody provides contact details and invites engagement through their website and social media.

Home Care Heroes and Day Service Stars is produced and sponsored by Ankota - If you provide services that enable older or disabled people to continue living at home , Ankota can provide you the software to successfully run your agency. Visit us at https://www.ankota.com. 

TRANSCRIPT:

More and more aging and disabled programs are focused on self-direction and letting our clients choose what's best for them. Today on the podcast, Melody Ray talks about what it really takes to make a self-direction program work for your clients. Enjoy. 
 
Welcome to the Home Care Heroes and Day Service Stars podcast. If you provide services to keep older or disabled people living at home, then this podcast is for you. Now, here's your host, Ken Accardi.

 

00:30

Well, hello and welcome to the latest episode of the Home Care Heroes and Day Service Stars podcasts. Today we have a really interesting topic. We're going to talk about self-direction and we're going to learn about what self-direction is and how this is a great opportunity for mostly it's folks with intellectual and developmental disabilities to lead better lives. And we're going to learn about what these programs for self-direction are. We're going to focus specifically

 

01:00

in the state of Kentucky where we have our exceptional guest whose name is Melody Ray, who was actually a pioneer. So she was really one of the first people in Kentucky to really put together a program as a community guide for basically self-direction and helping folks to succeed in this. And I think you're going to learn a lot from it and I'm really thrilled. So thank you for joining the program today, Melody, and tell us a little bit about yourself. Thank you so much for having me. I'm thrilled to be here.

 

01:29

So my name is Melody. I am the current executive director of ReSOARces, a nonprofit organization in Kentucky, currently providing a Medicaid waiver service called community guide service throughout other states. You may know it as information and assistance or information referral, but we provide this service to individuals who have intellectual and developmental disabilities and.

 

01:58

choose to self-direct within their specific Medicaid waiver programs. So the story of ReSOARces, how we got started, how this was even seen as a need, I feel like the best way to really talk about that would be to really go back and explain the Kentucky programs and where we fall within that.

 

02:25

Why don't we do that in just a minute, but let me, let me try to set a little bit of a grounding for like everybody here. And I have a little story that talks a little bit about history. So first of all, a lot of folks at listen to home care heroes and day service stars are providing. Care to older individuals and a lot are providing services to people with disabilities. And that could be, you know, often intellectual and developmental disabilities, sometimes physical disabilities, traumatic brain injury, or they've had no horrible car accident, that kind of thing. But.

 

02:54

So interestingly in disability services, there's a story that I'm just never going to forget. I spoke to a guy named Jim Thompson. And Jim, first of all, he's an older gentleman. He's over 80. He is somebody who was like a Silicon Valley, successful business person. And he was and is an advisor to a company that we've supported out there in California called Manos. And so when I first actually had a chance to sit down with Jim,

 

03:24

He told me that the reason that he's there is not only because he has this business expertise, but he has a daughter who is now over 60 years old and his daughter has autism and on the spectrum and fairly extreme autism. He told me that when she was a child that he was told, well, the only way we could deal with these people is to put them in institutional care.

 

03:49

And Jim was going to have nothing to do with that. It was his daughter, he loved his daughter. And just to kind of cut to the chase, I mean, his daughter was able to stay with the family and ended up developing unbelievably great skills. She ended up being a medical coding person for a big healthcare company out there, Kaiser, for a lot of years. And what I came to learn is that when she took a vacation,

 

04:16

She was so good at this medical coding, they needed like three people to fill in for her when she was away, right? So she ended up having this very productive life and Jim has had all these business accomplishments and he told me that, you know, but the thing he's the most proud of is his daughter and what she's been able to achieve. Well, since then, you know, so think about 60 years ago, so she must've been born in like the, maybe around 1960 or that kind of time, things have really progressed a lot in a positive direction.

 

04:47

We've gone from these people should be in institutional care to really trying to move to a world where in a first iteration, let's try to have people with disabilities live in their family and there's even more evolution now to say, okay, well not only should they be able to stay in their home, but we should help folks to lead their best life in their community. And I would say, you know, one of the most recent iterations there is what's called self-direction. So.

 

05:14

So what we're trying to do in disability service programs is to say that we shouldn't treat everybody with a disability the same. It's like, okay, somebody's gotta come to their house and help them with the cooking and the cleaning and whatever they need. It's like that we really want this person to lead their best life. And maybe if I had a disability and Melody had a disability and we have the same disability on paper, I mean, maybe my goal is, I wanna be able to go out.

 

05:39

and play video games or I want to be able to go swimming. And maybe Melody wants to be able to do yoga and Pilates, and she wants to learn how to be a good cook and that kind of thing. So we're all individuals, even though we have disabilities. And these programs that are called self-direction programs allow that individual, or in some cases, their authorized representative, sometimes a parent, is helping to direct those services. So when they're going to get a budget for support instead of just like, okay, well, we're assigning you over to this.

 

06:09

agency is going to send a DSP over and do the same thing as every other DSP that they're really helping folks lead their own lives. So here I have this awesome guest and I'm just blabbering on and on, but I thought that was an important story to share. And so the way I got to meet Melody is I went to a conference, which was the American Association for Intellectual Developmental Disabilities, AAIDD happened to be in, I think we were in Louisville, Kentucky.

 

06:39

And Melody actually works with this group that she mentioned. She's the executive director of ReSOARces, which is providing a service called community guides in support of self-direction in Kentucky. And actually she and a partner named Samantha had put together a program about what they had learned about providing a self-direction program. And they had also looked at several other states. I know that we're involved in.

 

07:05

FMS in California, in North Carolina. And do you remember off the top of your head Melody, or if you have the poster, like what states were mentioned specifically? I know Wisconsin, Pennsylvania, and Maryland, Maine, Illinois, and New York were some states that we compared rates to. And then in terms of the availability, yeah, Maryland, Pennsylvania, and New York.

 

07:35

So many different states are doing this. At Ankota, we actually, we make software for home care for older and disabled folks, and I didn't really know much about this, these kinds of programs until this customer in California called Manos started explaining to us, you know, how it all worked. 

 

08:01

But okay, so Melody, let's kind of, the rubber hits the road here. So basically what's happening is now you have somebody, they have a disability, they want to self-direct their services. So what does it mean that they, like what could it mean for them that they want to self-direct their services? Like what would be an example of how somebody might want to direct their services in self-direction? So in the context of what I know and how the Medicaid waiver works in,

 

08:30

Kentucky, someone, you first have to be a participant in the waiver program. So sort of tagging onto like what you shared about the evolution of disability care, these specific waiver, the specific waiver program that we work within, there's this umbrella, it's called the Home of Community-Based Services waivers. And the purpose of those waiver programs,

 

08:59

are exactly what you talked about, are to allow individuals with either brain injury or disability, either physical or intellectual, developmental to live in their own homes or live in their own communities and not in an institution. So that is the purpose of these waivers. And so then within those waivers and within the waivers that we work within,

 

09:28

or the individuals with intellectual and developmental disabilities, you have what's called traditional services. Traditional services are sort of, they're in their home. However, agencies, outside agencies are, they kind of work with the case manager. So at this point, if they're in the waiver program, they have a case manager. Their case manager helps connect them with

 

09:57

agencies that will then send their staff to the participants' home to provide them with care, you know, as they've been trained to do as they know how. However, then there is the other option, which is self-direction, or in Kentucky, it's known as participant-directed services,

 

10:27

the participant either becomes an employer with an EIN number, you know, the case manager kind of helps walk them through what this looks like. So they become an employer or they then or their guardian will pick an authorized representative to be the employer role. And then they at that point

 

10:56

hire, manage their own direct support staff that they know that they have chosen to come into their homes and and really personalize their care and be able to get to know them consistently because you know with agencies, they're, you're can't you don't know who's coming you know, you just staff.

 

11:26

who are available. And so with this option, there's more of a choice to who's coming into your home to take care of you, to help you get out into the community the way that you want to and do things. And so that is what self-direction and how you kind of get involved with self-direction.

 

11:50

All right, I love it. So let me so interestingly, yeah, so we have in Kentucky, we call it participant directed services, I would say generically, we call it self direction. Yes. And, you know, and different programs have this and, you know, and even thinking in, like elder care, there's sometimes programs called like CDS consumer directed services or New York CDPAP, you know, so there are some of these programs that are more about, you know, choosing your own

 

12:19

caregiver and things like that. And then like for example, in the California program, in some cases, you're being authorized for a certain budget, let's say for your services or if for elderly, for your care. So you're having kind of a budget for this. And then also like some of that budget might be

 

12:43

administered in terms of paying people for their hours of services and the others might even be like paying for something like yoga or gym membership or various things like that. So there's these programs that do that. So interestingly, and so Melody explained the story that she was hired by a wonderful person named Tina Scott who runs this group called

 

13:13

in Kentucky and case managers are these folks that are, you know, like, okay, this person has been, you know, approved by this program that they should get some care, they should get some services. And, you know, with that, they, you know, and, you know, essentially, they are able to, you know, get that. But if they want to go with a self-direction route, you know, they have the benefit of being able to choose their own caregivers or

 

13:42

direct the money their own way, but it's also complicated. So if you think about it, now we're asking this person, let's say that they're self-directing their own services and they have a disability. Now we're kind of asking them to almost run a business because there have to be checks and balances. So there's going to be some organization, like in California, they call it an FMS, in North Carolina, they call it an FMS, in Kentucky, they call it an FMA.

 

14:09

and they're the ones who are going to approve the bills and kind of liaise between the payers and that kind of thing. And then there's the employees themselves, and we have to make sure those employees are vetted, they have insurance, blah, blah, blah. And there's all these things that need to happen. And so what was happening that Tina observed is these case managers who are getting paid $150 a month for generally a one-hour check-in.

 

14:37

with these folks were being asked to help them run these businesses and that kind of thing. Exactly. And then she's like, hey, I need somebody to figure this out. And she got Melody. So tell us a little bit. So, you know, Melody, I mean, you stepped in as like, I guess originally the program manager, program director, became the executive director. So like, so what are all the challenges that go into making a self-direction program work for an individual? Oh, man. So, as you mentioned, it is just complex.

 

15:06

And I think that's just sort of the nature of it because first, it's a Medicaid, it's still a Medicaid waiver program. And as we all know, Medicaid, there's so much regulation, so much red tape. And essentially, at the end of the day, it's they have all of these eligibility requirements for employees and paperwork to keep up with. And it's all to protect the participants, right? To make sure that

 

15:36

you know, we're not just hiring anyone to care for people. However, what ends up happening is there ends up being all of this sort of quote unquote red tape that it can really cause issues, like the issues trying to self-direct to the point where, I mean, there were some case management agencies that if,

 

16:04

a participant wanted to self-direct, it was shared with me that they would kind of turn them away. Like we can't, we don't want that liability just because there is this sort of fear of recoupments because it is Medicaid and you go through and they have these audits and case management agencies. Again, like it sort of all fell onto the case managers in Kentucky to...

 

16:33

manage all of this, make sure all of their participants' employees were eligible. And it was in collaboration with an authorized representative, but there is such a lack of understanding of what all is needed, and there is so much that it was just such a burden. So a huge part of what happened with Tina at her case management agency, A1, was

 

17:02

that they received this influx of PBS participants who wanted case management, but they also wanted to self-direct their services. And so when Tina accepted all of this, all of these participants and her team accepted them, they kind of realized, oh my goodness, we have to keep track of all of these things. You have to keep track of all of these employees.

 

17:32

hiring and tax paperwork of their, ensure that they get their annual TB, that they keep up with their license and insurance information, that their background checks are ran, but not just ran, but ran correctly and using the correct links and initially incorrectly, all of these pieces that she realized it was just so hard to keep up, especially when case managers are,

 

18:00

they're busy doing case management, they're busy worrying about the and monitoring the health, safety and welfare of their people. And so on top of that. So here I am, I jump in, I tell this great story, starting from, you know, Jim Thompson taking things into his own hands for his daughter. And now we have this self-direction. So people can direct their care, they could really direct their own lives. But then what you're telling me is when

 

18:28

People start with that and there's all this, the quote unquote, the red tape, and we have to get, we have to find employees, we have to vet them, we have to have background checks, we need to dot our I's, cross our T's, get our Medicaid waivers and all that sort of thing. And then, and they're now being turned away by, nobody wants to take those cases because they're too hard to administer, it's too much for the case managers to handle and all those kinds of things. We've created this rosy picture, but it's really putting a lot of burden.

 

18:57

on either the case managers or the families to make that happen. And then all of a sudden, now we've kind of figured out, well, there's somebody called a community guide who can really come in and they can really change the equation. So tell us like, what's a community guide and how does that work? Yeah. So that's exactly what happened. Tina was like, how can I address this outside of just hiring someone?

 

19:25

in a one to manage this paperwork and she kind of had a bigger vision and that's how ReSOARces was born and like we kind of discussed before ReSOARces was not originally did not originally have community guide in mind we were just sort of building and providing that HR human resource entity for people who were self-directing to help with all of those HR pieces.

 

19:54

that you see in other businesses. And eventually when COVID hit, we had to really think about where our funding was coming from because we were still kind of trying to get on our feet. However, it's really difficult to fundraise and get out there when you can't. And so that was when we discovered the community guide service in...

 

20:23

within the Medicaid waiver program that we were serving people in. And that service essentially is exactly what we were doing. An HR entity as a community guide, you help a team and specifically the participant and the employer, you can help them with whatever they need. It's personalized to what they need. But in general, we're able to help with recruiting.

 

20:52

So helping with the interview process, putting out advertisements, and just being a part of that, and then helping with the hiring process. We at ReSOARces, we help fill out all of the paperwork. We have kind of put together all of the paperwork that each FMS or FMA requires. So kind of what I mentioned before is

 

21:19

We don't have a statewide FMA. I will say, I think Kentucky's working on that. I believe that's what I've heard. But for right now and what has been is that there are these different regional FMAs and they all follow regulation, but then on top of that, they have their own specific way of doing things and their own specific paperwork. So what we kind of did to help streamline that process

 

21:46

was put together packets in each of those so that, and then figure out, okay, what's the way that this FMA does things so that the case manager is not having to worry about that or the employer or rep, and we can just help employees fill out their hiring packets the way that it's supposed to. And then we help run the background checks. Drug tests for DSPs are no longer required within the waiver, but when they were, we helped coordinate getting their...

 

22:15

drug tests completed. At one point we kind of had our own in-office drug tests that we used, that we were able to use, but we helped connect potential employees with getting their TB screenings, their training that's required by Medicaid. There's a whole, it's College of Direct Support, this whole online training. We connect them with that to make sure that they're trained as employees in the way that Medicaid needs them to.

 

22:43

First Aid and CPR, all of those pieces we help with in the hiring process as well. And then after that, the managing, we have familiarized ourselves with what Medicaid says is required to remain eligible and compliant with Kentucky regulation to be a DSP in this program. And we do our best to...

 

23:11

to make sure that no one and no due date passes and everyone remains as eligible and compliant as they can. So that the service for the participant with a disability doesn't get interrupted because if you pass on the eligibility, a lot of times you're not able to get paid, no, you're not able to get paid if you're not eligible. But...

 

23:38

even more so some FMAs, they have it to where you can't even clock in if something is passed due. And so that sort of prevents that, which is good. You want them to remain eligible. At the same time, if you accidentally miss something or you just haven't turned something in and you have it, that's just one added obstacle to where now we have to scramble to find someone to come in and work and take care of this person because

 

24:08

the person who was scheduled forgot to, you know, you know, so, and so we kind of helped fill in that gap and help try to prevent as much of that from happening as possible to keep things going smoothly. All right. So let me jump in from there. So I guess, I mean, let's put this in perspective. First of all, time flies when we're having fun where we're coming short on the time that we have to spend together here. But

 

24:35

I, you know, hopefully we've gotten out of this so far is that these programs, these self-direction programs, whether it be called consumer directed, participant directed, different names, uh, and are available. Uh, we've mentioned that, you know, we've, we've specifically mentioned Wisconsin, Pennsylvania, Maryland, Kentucky, California, North Carolina. We know that these different States have these programs. You might not be aware of them. Uh, one thing I'll share is that in. Kentucky, there are like.

 

25:02

The reimbursements by unit for these services, there's kind of two levels of it. One is $10.69 per unit, which comes out to about $42, between 42 and $43 an hour. And then there's a higher level of that that reimburses at over $13 a unit, which is more like $52 an hour. So there's some pretty good reimbursements there. And there's really a need, and this is a growing need, to have disability services. It could be...

 

25:31

good reimbursement rates, but it's hard. I mean, you know, and I mean, as all of you know that you're listening, it's hard to get employees for your day center, it's hard to get employees in the field as direct service workers or as caregivers for the elderly and all that kind of thing. And just because this is a self-directed program doesn't mean that that goes away. But I think what this has really helped us is that, you know, to understand that there are a lot of pieces to being in the employee of record kind of program.

 

25:59

and that having these fiscal management agencies or financial management service providers, whatever they're called, that's great, but they're like pretty much the bill payers. They're the gatekeepers and the bill payers. And I think what we've learned something really special today is that there is something called community guides and these community guides are really able to make these programs happen so that people can realize these services. By the way, just one quick anecdote, Melody and one of her partners,

 

26:29

did a little bit of a study and they actually found out that the community guide program in Wisconsin is reimbursing at more like $84 an hour. So it is, you know, it is something that it's, you know, you could do well by doing good, right? And that's what we're all about here. And the, and you know, home care heroes and day service stars is doing well by doing good. And so with that, let me turn it back to Melody, I guess we're kind of in wrap up mode, but

 

26:56

Yeah, any last things that you want to share? And then also, if folks want to get in touch with ReSOARces to maybe learn a little bit more, do you have any advice on how they could get in touch there? Yeah, so last words and wrap up, just like you said, what we do is not to say that everyone should do this or else you're not living your best life, right? But...

 

27:24

it is an option and what we do at ReSOARces is we want to help make sure that the self-directed option is the best that it can be for the people who want to do it. It allows us to kind of handle a lot of those grant pieces and hopefully it can leave room for the teams to think more about their daily life and what their quality of life wants, what they want that to look like and

 

27:53

they want their day to day to look like. And so that's, that's our main goal is to help support teams and what they envision and help support participants for what they envision for their life. And yes, so we have our website at www.ReSOARces.com. Resources is spelt R-E-S-O-A-R-C-E-S, sort of a play on words.

 

28:23

The idea was to soar above life's circumstances. And so, yeah, while providing resources to do that. So you can find us there. We are also on Facebook. We have a business page there that anyone is welcome to follow. And then our, yeah, my email. If anyone wants to get in touch with me with any questions.

 

28:52

about the program or ReSOARces itself is melody.ray, W-R-A-Y, at ReSOARces.com. All right, well, this has been an amazing episode. And I really do think that, you know, participating in self-direction and really, you know, making people's lives better and learning about, you know, how to navigate through this.

 

29:21

I mean, it could be a way that, you know, like it might seem daunting at first, like everything, every one of you, you started your agency, you've grown in your agency. And all of those challenges, you know, this might sound like a challenge just like those, but I know that you could work through it. And I guess that one last thing that Melody shared with me is that, you know, she was just there starting this program and now ReSOARces is actually providing, you know, self-direction.

 

29:50

community guides for over 60 participants in Kentucky. They now have three full time, you know, of the community guides that are helping with all this. And it's really something that's grown and you know, it's really changing lives. So one more time, thank you so much, Ms. Melody. And yeah, yeah, let's like you have something else you wanna share. Yeah, just one more thing to add onto that. Just a word of encouragement for anyone out there. Like I shared with you earlier.

 

30:17

when it was just me and I was in the brink of it, I had this plan for marketing and all of these things, but really what ended up growing us as soon as we started providing community guide services was word of mouth, people realize how beneficial community guide was for the team. And we were able to provide services that made a positive impact and we naturally grew from there. So yeah, if you are in the trenches of something, definitely just...

 

30:46

Yeah, be encouraged that your good work will be noticed and will help with that growth. You know, more than even a plan, I'm not saying don't have a plan, but you know, it will have such an impact that you don't even realize until it's happened. Yeah, that's amazing. I mean, what a testament to what you've done is that, you know, everybody's seeking you out. Like even if you maybe didn't make all those web pages you were hoping to make in marketing, but people are just coming to you because they're hearing about it through their...

 

31:16

through their contacts and their communities because of what you're doing. All right, incredible. So thank you so much, Melody Ray, and thanks to everybody for listening to this episode of Home Care Heroes and Day Service Stars. Thank you so much, Ken.

 

31:34

Thanks for joining us today on the Home Care Heroes and Days Service Stars podcast, produced by Ankota. You can listen to back episodes by visiting 4 That's the number four, then the words, 4HomeCareHeroes.com.

 

 

 

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