Who Supports Adults With Disabilities When Caregivers Age

Most families don’t worry about long-term care until someone gets older, but what if your loved one needs support for life and ends up outliving mom and dad? That’s the reality many families face with autism, Down syndrome, and other developmental disabilities, and it can turn into a sudden crisis for siblings who never expected to be the “next caregiver” without guidance.

We sit down with Samantha Harrison, president and lead disability support strategist at Momentum Family Strategies, to talk through what those first phone calls really sound like: parents declining, siblings overwhelmed, and huge questions about housing, safety, staffing, and money. Samantha shares how her work in Kentucky’s Medicaid waiver programs shaped Momentum’s focus on helping families navigate services, build sustainable care teams, and make a plan that works when parents can’t continue.

We also break down practical options like the Supports for Community Living waiver and the Michelle P waiver, including a critical myth that stops families from seeking help: the idea that “residential services” automatically means a group home. If you’re trying to understand home and community based services, future planning dollars, special needs trusts, and how to support an adult with developmental disabilities while keeping your own life intact, this conversation is a strong place to start.

Subscribe for more local stories, share this with a family that needs it, and leave a review so more Kentucky neighbors can find real support. What part of “life after mom and dad” planning feels most confusing right now?

Transcript

Welcome To Good Neighbor Podcast

SPEAKER_00 0:00

It's the Good Neighbor Podcast, the place where local businesses and neighbors come together. Here's your host, Mike Murphy.

SPEAKER_01 0:11

Thank you, Charlie. Yes, I am Mike Murphy, host of the Good Neighbor Podcast. We talk to local business owners, we talk to local nonprofits, we talk to influencers, movers, and shakers, and most of them are your neighbors. And so we're letting people know all about the people that keep our community humming. And somebody who I have come to know recently and am getting to know a little bit better today is Samantha Harrison. And Samantha is the president and lead disability support strategist for Momentum Family Strategies. Samantha, did I get that right?

SPEAKER_02 0:52

Yes.

The Life After Parents Crisis

SPEAKER_01 0:53

Okay. It's a mouthful, so I'm always afraid that I'm going to screw it up. But uh sounds like I've done a great job uh today, anyways. And so um welcome to the podcast, Samantha. And uh say hi to the listeners and please let everyone know um what does Momentum Family Strategies do?

SPEAKER_02 1:14

Yes, thanks so much for having me, Mike. Um again, my name is Samantha Harrison. I am the president and founder of Momentum Family Strategies. We support adults with developmental disabilities and their siblings with navigating life after mom and dad. So when you have someone that has autism, Down syndrome, or a different developmental disability, those folks oftentimes need long-term care services. We think a lot about long-term care when it comes to aging, but we don't talk as much about the long-term care services that people with developmental disabilities need. And we are seeing now more than ever that adults with developmental disabilities are living longer than their parents. And we have an emerging crisis of aging parents that are still trying to take care of their adult siblings or their adult children with disabilities, and then their siblings trying to pick up the pieces both for care for mom and dad and also care for their sibling.

What Families Ask First

SPEAKER_01 2:15

Okay. And there's a lot uh that needs to kind of happen um around supporting a family that's exhibiting that sort of need. I know that um speaking from personal experience, uh first of all, most of us know somebody that has uh a child that's uh, you know, well, first they're children, and then as they grow up, you know, their needs change and the needs of the family start to change. And then someday you realize, oh my gosh, they're adults, and oh my gosh, I may not be around forever to support my child or children the way I've been doing all of their lives up till now, and they don't always know what to do. And whenever I've seen that sort of scenario play out, it's kind of I don't know, just eye-opening for me because I'm I'm blessed that I don't have to worry about that. But someday I may. But in the meantime, I think it's I think it's um kind of good that all of us in the community can be aware to support our friends and family members that are exhibiting that sort of need. So when somebody calls you when they when they either come to your location, when they pick up the phone, go to your website, what is a common introductory message to them or what do they ask usually?

SPEAKER_02 3:45

Sure. You know, the thing that we are seeing most commonly is siblings whose parents are declining or have recently passed. Um so it's never, you know, really a light conversation. Um, it is a, oh my goodness, I knew I was going to be responsible for my brother for the last 45 years. But today's the day where I have realized that you know mom is not doing well and she can no longer support my brother. And I don't even know where to start I don't know if he should live with us. I don't know if there's services available. Do am I going to have to quit my job? You know, really big pivotal decisions is what usually comes to us first, unfortunately.

SPEAKER_01 4:30

Yeah. Things that keep somebody awake at night for many, many nights before they reach out. And I think, you know, I had no idea literally until the past couple days that momentum family strategies existed.

unknown 4:48

Yes.

SPEAKER_01 4:48

I went to your website and I kind of saw what you do what you do, and I was sort of comforted in knowing that there are people out there that can kind of help some of the people that I know. And many of the people I know, you know, I I have a friend who's got two autistic sons. And then I've got multiple friends that have Down syndrome children, um, some toddlers, some teens. And I've just known many people through the years that when I looked at everything that you do, I'm thinking, okay, uh, this is uh somebody that I need to introduce Samantha to, but they may already know you. So yeah, this this conversation is gonna um I think go a long way towards reaching a lot of people that that you need to reach.

Samantha’s Path Into Waivers

SPEAKER_02 5:39

Yeah, and I certainly hope so. So momentum got our start um officially about four years ago. I had been working in our social service system primarily in Medicaid waiver programs, which are designed to help individuals with disabilities continue living in their home as opposed to living in an institutional setting, um, you know, uh nursing facility, that type of a thing. I spent about 15 years doing that work. Um and after working with several of my peers from high school, they came to me and said, Hey, you're graduating. Would you like to have a job working with, you know, my friend at the time? It seemed very odd. Three or four parents approached me about that. And I was like, that's weird. They're my friends. Like, I don't need to be paid to do that. Of course, then you know, not knowing that there was a whole program designed for that. Um, so our Medicaid waiver programs allow people to stay living in their homes and to have one-on-one support that they need to be able to live life and have um, you know, the same life that a typical adult would have, but folks with developmental disabilities need more support with navigating some of those tasks. So I did that for a while. Um, and then met a friend of mine who um at the time she was 30 years old, she had cerebral palsy, she lived in her own apartment with a Medicaid waiver and had a team of about 10 to 15 caregivers at all times. Um, and that was a lot to manage, as you can, you know, imagine. Yeah. Um, and so the question became, you know, if if I'm gonna stay in, if she was gonna stay in her apartment, how do we make that happen and keep good caregivers? Um, because you can have a caregiver, but that doesn't necessarily mean they're invested in your support. And what we saw was about every um six months we had turnover, and that blessedly for her, wasn't a new person necessarily just stayed for six months, but these jobs tend to catch people in transition. So she would have a college student come in and they would have two or three years and then they would go. And so on a six-month cycle, we learned how to recruit and hire great caregivers that were a good friend for my friend, um, that helped her to retain them over several years because they were invested in supporting her and she was invested in them as an employer. And so when she unexpectedly passed away in 2022, her family and I looked at each other and were just blown away at how hard keeping up all of that um recruiting and hiring and all of the program rules were. And so I took a deep look at what is Kentucky doing with our Medicaid waiver programs compared to other states. And admittedly, my first question was, what is Kentucky doing wrong? I have since you know revised that to what are we doing differently than other states? Um, but what I found is we we're doing many things differently and we have a lot of room for progress to make support like that accessible for families. So I took um six months and I worked at a national consulting firm that helps to build Medicaid labor programs. And I came back to Kentucky to help families specifically with this life after mom and dad piece because we're seeing it more and more often now, um, especially with our aging population, that siblings just do not have the support they need to be able to continue making life work in the same way it always has when mom and dad can't continue.

SPEAKER_01 9:02

Okay. Well, you've got a pretty strong background. Um, and I will say you have uh you're high energy, you have a nice sunny disposition about you.

SPEAKER_02 9:13

Thank you.

SPEAKER_01 9:14

So you you're representing very well so far. And uh so I I know there are a lot of people that are gonna listen to this conversation and they're gonna have a lot of questions for you, and they're gonna maybe want to reach out and help however they can. So, you know, um, do you have a preferred method for people to reach out to you?

SPEAKER_02 9:38

Yes, um, our website, Momentum Family Strategies.com. There is a button on the top that says find a time to talk. Um, and if you click that, um, it'll take you to a place where you can get in touch with us.

A Boone County Aging Siblings Story

SPEAKER_01 9:50

Okay. Well, very good. Do you have a particular either story or example that you kind of point to that um is particularly close to your heart or that you're excited about, proud of? Um it could be one or two stories. Um, what would those be?

SPEAKER_02 10:08

Um so recently we just wrapped up um serving a family right here in Boone County who had um previously never had support from our social service system, meaning they never had any kind of care support. The individual was in her 90s with developmental disabilities, which um, if you're familiar with um that kind of support, a lot of people with developmental disabilities do not live to be in their 90s.

SPEAKER_01 10:33

Yeah, that's surprising. Yeah.

SPEAKER_02 10:35

Yeah. Um, and so what had happened was mom and dad had passed um many years ago, and a sibling had stepped in to provide support and had done that for the rest of their lives together. And so now we have siblings in their 90s trying to support each other, um, which was an incredibly um heartwarming thing to see. You know, they've done a great job for all of these years. Um, at the same time, you know, your body doesn't work the same way. And um, you know, uh one of the myths that I think we see often is that um we don't have people in their 90s that are caregivers for someone else. They're receiving the care. But what we're noticing not only here in Boone County, but also across the state of Kentucky is that there are many caregivers in their 80s and 90s that are still responsible for being the primary caregiver for their adult child with developmental disabilities.

SPEAKER_01 11:33

Yeah, um, I hadn't thought about that, but that's somewhat surprising. And um I think it kind of speaks to how humans can be resilient and you know take on any task when I hate to say it, but when they really have no choice, you know. But it doesn't mean that they should feel alone in that endeavor. On what level do you interface with people and who helps you do that?

Waivers That Support Home Living

SPEAKER_02 12:07

Yeah. So we work with families on a consultation and advisory basis to help them access the programs and services that they need that will then provide the caregivers on the ground. Um, so Kentucky provides several Medicaid waiver programs that offer funding to help people stay in their homes. Um, those programs some of our listeners may be familiar with. The Supports for Community Living waiver offers residential level services if you're familiar with the point and um New Perceptions and ProbWorks. Those folks, um, some of them are using funding from those programs. Um and then um the Michelle P waiver also provides services generally for younger folks that are waiting on residential level services. So one of the big um myths that we see is that you can't have residential services unless you're going to live in a group home. And so what we work to educate families on is that the supports for community living waiver is available to provide support that parents would have. When you don't have a primary caregiver available anymore, it can offer, you know, approximately 24-7 support. There's several services that have to come together to get to that 24-7, but they can continue living in their family home or in the sibling's home or another living situation. And we meet with families to help walk them through the process of the applications and the organizational setup of how do we get funding? How do we use maximize the future planning dollars maybe mom and dad left us to care for our loved one? And then how do we recruit and hire good people to come in to provide those services?

SPEAKER_01 13:50

Okay. So you're connecting people to resources. And do you have people that are also maybe donating funds to just kind of help help you make that happen or to help families directly? Um how does how does that work?

SPEAKER_02 14:09

Yeah, um, so in the future, we're hoping to develop a nonprofit arm. Right now, we are working in a very quick manner to respond to this emergency that has come up with the number of families that are trying to access services with mom and dad being gone. We primarily at this time work with families that have future planning dollars set aside to use for their loved ones' care. Um, we also work with families that may not have that in a different kind of setup, but our primary situation um primarily we support families that have um, you know, are working with an estate planner, have set up a special needs trust, those types of things, and have funds set aside for that. And the question for the siblings becomes okay, mom and dad left me money to care for my loved one. They had they knew from the time that my brother or sister was born they were gonna have to have long-term care, and they got a life insurance policy. So when mom and dad passed, money went into this trust, and I'm sitting with funds and I don't know how to use them. Um, and so we help people look at what your loved one needs, what funds are available, and then how do we maximize those future planning dollars so that they can have their best life, get the care that they need, and also have funds available still for being able to go on a vacation or to buy the things that they want to buy and those types of things.

Why Planning Often Starts Too Late

SPEAKER_01 15:27

Okay. I have a lot of attorney friends that that kind of help um families like the ones you're describing set up trusts, you know, to have money there and some structure to care for the you know their kids once once they're gone, and you know, so that the siblings have resources to pull from. Do most people come to you when they're already kind of at that moment of crisis where they're like, oh, oh geez, um we're kind of just figuring out that we need help and we should have started this process years ago? Or do you have people coming to you saying, you know what, we've taken a peek into the future and we know something's coming and we need help setting something up now? Which is most common?

SPEAKER_02 16:17

Most common is the emergency situation, um, and a lot of that I think is generational. Um, so with our older generation, um, we have a lot of pride, and these folks were people who could have sent their children to institutions for their life. And so, because of that, what we hear in almost every conversation with siblings that are in their late 50s and older, um, mom and dad felt like it was our problem. And we are responsible for this. We don't want government help because they fear that that might mean abuse, um, even though we have come a long way with government-funded services since that day. Um, and so what we're seeing with the older folks is that when mom and dad are um declining or deceased, often that's the emergency situation that's triggering looking for help. Many of these folks have never been connected to social service programs before. Um, the the family I mentioned earlier had had never, you know, didn't know that there was anything available until they happened to see a momentum informational piece at the Black Goose and Union. Um, and uh, you know, was like, this would help us a lot. We you know, we'd really like to get connected. And so um that happens. We also are now seeing some folks that are starting to plan earlier. Um we're in year four at momentum, and so I'm hoping as we go forward we'll have more folks that are you know uh looking to plan a little sooner as well. Um, but really, you know, when we transitioned from general Medicaid waiver support to working on life after mom and dad a couple of years ago, we did that specifically because we're seeing this crisis that we want to help respond to.

SPEAKER_01 17:55

Okay.

unknown 17:56

Yeah.

SPEAKER_01 17:56

Before we wrap up the conversation, I just kind of want to pivot towards you personally. Um Little Birdie told me that you're getting married soon. Is that correct?

SPEAKER_02 18:07

That is correct, yes.

SPEAKER_01 18:10

A little birdie that told me that was named Samantha.

SPEAKER_02 18:13

So yeah, uh myself, yes. Uh very excited about that. You know, it's a big year uh to do all of those things.

SPEAKER_01 18:20

So yeah, and a doggy named Boone, I hear is doggy. Yeah, named dog named Boone. I have a um dog in my family named Boone as well.

SPEAKER_02 18:31

Oh goodness, I love that one. Yeah, we uh we ended up naming our Boone after Mayor Boone of Rabbit Hash. Um boo our Boone is six months younger than Mayor Boone. Um and so when we were thinking about getting a puppy, uh, we saw that and thought, how wonderful. We've kind of started our life here um in Boone County, and we'd love to take that with us.

SPEAKER_01 18:55

So okay. Well, you've got a lot of exciting things happening personally in your life. So, you know, marriage is one of those things that um it's um it's that's uh a great blessing. But there's a lot of work around that.

SPEAKER_02 19:07

So I'm having fun with it. Um, you know, I'm also not uh not naive to the amount of work, but we're uh in it and committed and and ready to do it.

A Message For Neighbors To Share

SPEAKER_01 19:19

So okay, good. So before we sign off, is there anything we haven't talked about that you want to make sure that we fit into the conversation? Or do you have a specific ask of the community at large um that's just sort of you know, you never know uh who's listening, you never know what their particular need is. But do you is there anyone out there that uh you just kind of have a you know a megaphone message for? And if so, what would that be?

SPEAKER_02 19:49

I sure do. Um, you know, one of the things that I think um neighbors inadvertently um move away from is having conversations with neighbors about what's happening next for their loved one. We can have someone that you went to church with and have gone to church with for 25 years, and um everybody assumes that that family has a plan for what comes next. Um unfortunately, especially with our older folks, that plan is very unclear. Um and so my message is if you are connecting with someone in the union community that really needs um future planning in some way, right? If they're um they're an adult with developmental disabilities, if they have a child that you know that has developmental disabilities, please encourage them to contact us. Um you know what we really need from our neighbors is folks to be willing to spread the word that there is support available, even if the family has never chosen to use government services before, they're not sure what's out there, there's a sibling that stepped out of the workforce because they're trying to manage this because they feel like it is their responsibility. They shouldn't have to do this alone. And we want to make sure that we are there for siblings to help them find the path to being able to have the most support they can for their sibling and for themselves, because they can't take good care of their sibling if they're not able to take good care of themselves. And there are programs out there that are available for that, and we would love to be able to show them the way.

SPEAKER_01 21:21

Well, very good. That's a good way of putting it. You know, you mentioned before perspectives. You know, there are there are many, many community partners out there uh that you work with. So I just wonder like I know people that work with perspectives. Now, would perspectives be somebody that might share your information with them? Um, is that how people find out about you?

SPEAKER_02 21:42

Yeah, so um we are working to build the community relationships with all of our um partners here. Um we are finding that um this is a tough one. I'm so sorry. Um

SPEAKER_01 22:00

All this dead space is going to get cut out, so don't worry about it.

SPEAKER_02 22:02

I know, I know, I know. That's why I was like, let me just take a second. Um right now, a lot of folks are finding out about us um kind of organically through interestingly, um, materials in our local coffee shop seems to be a really hot spot for people to learn about us. We are finding that families are going to meet with their friends and loved ones at coffee shops and having conversations about what to do and how stressed they are and they're not sure where to go for help. We are working to build relationships with community partners to help get the word out as well. Um, one of the things that we are finding a little challenging is while we have great um organizations like Perspectives and the folks that we mentioned earlier, and we want to be connected with those families too. We are working really hard to try to find the folks that have never touched our social service system that are more in the church communities and you know, maybe they're meeting at coffee shops and um talking with doctors that know that these folks and that kind of a thing. Because while we have incredible services that are happening in our social service system, we have a whole group of people that have never accessed help before. And those folks I'm very worried about, you know.

Are Waiver Funds At Risk

SPEAKER_01 23:14

Okay. Speaking of worried about, I mean, do you think just um uh in general, the the Medicare services that you've mentioned throughout our conversation, um is some of that funding at risk, or do you think it's pretty solid? Is it sort of, I guess, I don't want to say nothing's untouchable, but you know what if you have your ear to the ground, yeah, what what are you hearing? What's what are your what are your thoughts on that?

SPEAKER_02 23:42

For sure. So nothing's untouchable. Um, everyone's scared is what I'm hearing. You know, um, and uh certainly with everything that's going on, um, there is a right to be. Um at the same time, ear to the ground. There has not been anything happening in Kentucky that says that our waiver programs are at risk. So specifically Medicaid waiver programs. Um, there are, of course, changes happening with Medicaid where if you have a loved one there, you need to be checking on how often you might need to renew those services because those rules are changing in terms of like insurance and those types of things. It's changing for work requirements, but generally we're not seeing a whole lot of the changes impact people with developmental disabilities specifically.

SPEAKER_01 24:23

Okay.

SPEAKER_02 24:24

At this time.

SPEAKER_01 24:26

So they can reach out to you at what's the phone number if if they don't want to go to the website, what's the phone number?

unknown 24:33

Yeah.

SPEAKER_02 24:34

502 208 8906. That's us at momentum.

SPEAKER_01 24:40

And momentumfamily strategies.com.

unknown 24:44

Yes.

SPEAKER_01 24:44

Okay, good. All right. Cool. So um we're about to wrap, but I would ask the the final question is um contact me, Samantha Harrison, if dot dot dot. What comes after that? Dot dot dot.

SPEAKER_02 25:06

If you have um a sibling with disabilities that you will be caring for now or in the future, um, it's never too early to start having conversations about these things. Um, if you're an aging parent that is hearing this um and you're not sure what your plan is, please contact us. And if you're a community member that would love to connect, um we would love to get to know some more folks. I'm located in Oak Brook, um, right next door to Union, um, and I would love to get to know everybody that's listening.

SPEAKER_01 25:33

Okay. Well, you you you mentioned uh Black Goose, shout out to Black Goose.

SPEAKER_02 25:38

Yes, yes.

SPEAKER_01 25:40

I know them well.

SPEAKER_02 25:41

Yes.

SPEAKER_01 25:42

Wonderful coffee shop. So I I kind of like that you're you know using them to plant seeds, and I think that's uh it's a wonderful use of guerrilla marketing.

SPEAKER_02 25:52

You know what everybody keeps telling me that. And I when I first put uh flyer up um in a coffee shop, it it might have been black goose, might have been the first one in the area at least. Um I didn't really think that was going to be something that would be effective, but we're really working on unique guerrilla-type marketing, I guess, um, to help reach this population that isn't otherwise connected. Um and so it's it's been a bit of a um flux of creativity to reach those folks. Um, but I was certainly glad when um Black Bruce agreed to host us there.

SPEAKER_01 26:23

Yeah. Well, storytelling and education is something that I'm all about, you know, around helping to spread anyone's gospel here in the community. So today, our uh 28-minute conversation thus far has really gone a long way towards helping you build awareness here locally for the local community. So thank you for all the good work you're doing within the local community. And thanks for spending time with us today. And with that, I will say that um this wraps it up for the latest edition of the Good Neighbor podcast located here in Union, Kentucky. So, Samantha, until you and I have another conversation, let's just say goodbye to everybody. Say goodbye, Samantha.

SPEAKER_02 27:10

Yes, goodbye, everybody. Thanks so much for having me.

SPEAKER_01 27:14

It's been fun. Thanks for sharing all the um information um about uh Momentum Family Strategies. Anyone uh needing to reach Samantha, Momentum Family Strategies.com is the website to go to. I've been there, it's full of lots of information, it's very eye-opening. And um I think that uh if you if you uh don't have the need yourself in your in your personal family, you know somebody that does need their services. So please reach out. Until next time, everybody, this is the latest edition of the Good Neighbor Podcast. So long, everyone. Take care. Bye-bye.

SPEAKER_00 27:50

Thanks for listening to the Good Neighbor Podcast Union to nominate your favorite local businesses to be featured on the show. Go to gnpunion.com. That's gmpunion.com or call us at 859 651 8330.