Are you feeling the weight of the "Disability Squeeze"? Learn how to identify financial burnout and the first steps toward stability for special needs families.

Show Notes:

Stop living in financial survival mode. Learn the one ‘recalibration’ step that changes everything for your family’s future.

Have you ever felt a heavy, persistent exhaustion that sleep just can’t fix? For parents in the disability community, this is often more than just “caregiver fatigue”—it’s financial burnout.

In this interview with Ann Hynek, founder of Hestia Wealth & Wellness, we pulled back the curtain on the “Disability Squeeze.” Recent 2026 data shows that 90% of special needs caregivers admit retirement planning isn’t their main priority because they are consumed by the immediate $30,000+ annual out-of-pocket costs of care.

One note Ann added after the interview finished was that the cap on the ABLE account is $100k. But the annual contribution limit to an ABLE account, at least in Colorado, is $20k. So if the person has 100k in a 529, they can contribute $20k over five years. As you listen to that part of the interview, this will help you know how you can apply what you’re learning in this interview.

Key Takeaways:

• Name the Burnout: Admitting you are experiencing financial burnout is the first step toward solving it.
• The “Millionaire” Myth: You don’t need to be wealthy to start a Special Needs Trust; life insurance can be your funding vehicle.
• Recalibrate Early: Moving from survival to stability starts with a judgment-free financial inventory.
• Community is Capital: Finding your “people” can save you thousands in avoided mistakes and shared resource knowledge.

Connect with Ann and Hestia Wealth & Wellness:

• Website: https://www.hestiawealthandwellness.com
• Facebook: https://www.facebook.com/profile.php?id=61578671966050
• LinkedIn: https://www.linkedin.com/company/hestia-wealth-wellness

Work with Tonya as an IEP Coach: If you’re looking for personalized support, a trusted partner, and expert guidance through the IEP process, I would be honored to be part of your team. Find more information about my IEP coaching services here: https://waterprairie.com/iepcoach

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #151: Why Special Needs Parents Are Financially Burned Out — And What to Do About It

Stop living in financial survival mode. Learn the one ‘recalibration’ step that changes everything for your family’s future.

(Recorded March 24, 2026)

Full Transcript of Episode 151:

Ann: I hate to say Special Needs Trusts, because I think people hear the word “trust” and they’re like, “I don’t fly private.” Like, “I don’t need a trust fund.” But the reality is Special Needs Trusts are created specifically for families to have resources set aside for their loved one.

Tonya: According to the 2025 reports from JAMA Pediatrics, the lifetime cost of raising a child with a disability can range from $1.4 million to over $2.4 million. Today, we’re diving into a topic that is often felt, but rarely named, that’s financial burnout. Welcome to the Water Prairie Chronicles, the podcast for parents of children with disabilities.

I’m your host, Tonya Wollum, and I’m glad you’re here.

On this podcast, I talk a lot about the emotional and physical toll of caregiving, but there’s a specific heavy exhaustion that comes from the constant disability squeeze on our bank accounts. If you feel like you’re running on empty, you aren’t imagining it.

Joining me today is Ann Hynek, founder of Hestia Wealth and Wellness, who works specifically with families navigating the financial reality of raising a child with a disability. She’s going to help us understand why this is happening and what we can do about it. Ann, welcome to Water Prairie.

Ann: Thank you so much for having me, Tonya.

Tonya: This is one interview that, hits close to home for me because it’s so important that we help our families get as strong as they can.

 One thing that we do talk a lot about is caregiver burnout. A lot of our listeners have heard of that, but we don’t always talk about financial burnout.

 It sounds different. It may feel different, but it’s a name that we need to pull in there. So, can you tell me what exactly does financial burnout look like inside a family, not just on a spreadsheet, but in real life? And why do so many special needs parents experience it without ever having a name for what they’re going through?

Ann: Caregiving and caregiver burnout is definitely a huge topic. The US has about 63 million caregivers.

 Many provide complex unpaid care, and 60% of caregivers experience symptoms of burnout relating to those responsibilities. And I think one of the unique things about caregiver burnout, specifically when it comes to finances is that there are a lot of invisible costs when it comes to raising a child with special needs.

 We as parents, face costs that most families never anticipate. There’s therapies and specialists, there’s adaptable equipment, there’s private school or educational advocates, and then medical travel if you need to find a specialist. That’s not very close to your home. And then there’s the reduced ability for one parent to work.

So I feel like we see articles all the time of the growing cost of childcare and how more and more parents have to stay home because they can’t afford daycare, as a dual-income household, and I think this is even more prevalent for families who have children with special needs. They face lost income because one parent has to reduce hours or leave the workforce altogether.

 They have to care for their child around the clock. They have to homeschool their child. And I think, I think this really creates enormous pressure over time. So it’s, it’s those, it’s those hidden costs that nobody sees or nobody considers. I think that is probably the number one source of burnout.

 Also when it comes to financial burnout, one of the scariest questions we as special needs parents all ask ourselves is what happens when I’m no longer here?

And I think one of the things that I just wanna say to everyone and remind myself of on a regular basis is you don’t need to be an expert in everything. you’re an expert when it comes to your child and what they need. And so I think before anything, before you worry about the money, before you worry about what’s going to happen in the long term.

What’s helpful for me, what’s been helpful for me is creating a care plan. And so instead of wondering who’s gonna be in charge, who will be the guardian, who will take care of the money, who will administer my son’s resources, and his needs? It’s really about writing that down and essentially creating a manual or a playbook specifically for your kids.

So when you’re no longer around, someone can take it on and read it and say, okay, these are the things that we wanna do. We wanna make this transition as smooth as possible. And so I have to say that has really helped me. I think the other thing when it comes to financial burnout is just the total and complete isolation.

I think we as caregivers, feel that isolation a lot. I know that when my son was diagnosed, there were obviously a lot of emotions, but I think isolation was probably one of the starkest and most difficult to deal with. I also think when it comes to finances, just in general, most people don’t really like to talk about money, and most people don’t like to face their own mortality.

And so I think especially when it comes to special needs families, there’s even more isolation because of those very facts. I think the best thing that I did to help me through that was find moms like me. It’s like, find your people. You need to be in a place where there are other people who get it, and you can talk to them about what you are going through and ask them questions.

So you can even get used to then talking about finances and asking financial questions in an environment where you feel safe. But I think finding your people is definitely the number one, the number one thing that people need to, to try.

Tonya: I’m gonna jump in on that too.

 Listeners, if you haven’t heard me say this over and over again about finding your people, your support. ’cause you have to have this.

Ann: Yeah.

Tonya: It doesn’t have to be a parent with the exact same diagnosis for their child.

Ann: Yes.

Tonya: You need another parent who understands your path, but it could be like, my children have a different diagnosis than your son.

 But it doesn’t mean that we can’t connect and we can’t support each other.

Ann: Right.

Tonya: We understand therapy appointments. We understand medical costs, and the big one that all of our parents understand is that unknown. You know, you go through all that emotion of the first diagnosis. And, I don’t know about you, but for me, I jumped immediately to adulthood.

Like, where are they gonna land later, you know? ’cause all of your dreams change, and we’ve addressed the grief of this sometimes.

 That you have to go through different, different levels and stages.

Ann: Yeah.

Tonya: Until you’re able to embrace your child for who they are and let them kind of direct that path for you.

And then it’s very freeing once you get to that point. But there’s a little journey you have to go on to get there. And, and, and you’ll go through stages of this as, as, as your child grows. So parents, you don’t have to find someone exactly like you, you just need someone out there that you can go to and start with that.

And there are a lot of support groups out there. There are a lot of larger organizations that can help you find that group. And we’ve said this over and over again. Facebook may be your first step. There’s a lot of groups there that can get you connected. At least virtually until you can find someone who’s in your community.

Ann: Yeah, no, that’s, that’s, that’s absolutely right. I think what was, what was interesting, and one of the things that I would probably do differently if I had the opportunity to go back, is I went down a rabbit hole on Google after my son’s diagnosis. And to be completely honest with you, that made me feel even more isolated, right?

Because there were so many providers out there, but I had no idea. Which one was right for my son. And the ones that I selected, or the ones that I reached out to, a lot of them said, you know, we’re not taking new patients, or I’m not taking on new clients. And so that, that was especially difficult. And I think finding the moms groups that I found, meeting the other moms that I’ve met.

They said, this is who I work with. And so it was almost one of those things where it was like, oh, I have a warm introduction and I’m not just calling strangers.

Tonya: And even knowing what questions to ask Yes. You don’t even know to begin with.

Ann: Exactly.

Tonya: And, and those other parents can help you.

It’s where what you and I have experienced can help the next family that’s younger than ours. Know where to start just by hearing the part, part of the conversation today, even though it may not be what the topic is.

Ann: Yes.

Tonya: They’re gonna hear something in this, in this conversation that’s gonna trigger a question.

Ann: Absolutely.

Tonya: That at least, at least they’re starting on, on, on another path here to, to go on and start asking.

Ann: Yes, exactly.

Tonya: Yeah. For the, for the parents who’ve just heard about that, they’ve never thought about putting a name to this before.

Ann: Mm-hmm.

Tonya: But they’re, they’re hearing what you described there. Um.

And thinking, this is me. You’re, you’re talking about me. What’s one thing they could do this week to start getting a better grasp on it?

Ann: Okay. That’s, I think that’s a great question. So I don’t want to assume that everyone is just like me, but when I am thinking about a million different things, whether it’s therapies for my son or where he’s going to go to school, or how to get an advocate on an IEP and all of those different things, if I don’t write that down.

I slowly start to go crazy. And so I think one of the best things that parents can do right now as they start to figure out what their financial plan is going to look like or what their financial concerns even are, is just. Start writing it down. Figure out how much am I paying the therapist on a monthly basis?

How much longer do I think we’ll be needing this therapist? Do we need to look at other specialists? What does it look for in terms of special programs for summer camp? What are, what are we spending on home health aids and people who come in and, and help. Um, but then also looking at. The benefits through your health insurance, like what is offered, what is not offered?

Just writing everything down and essentially making an inventory of the resources that you have and then the areas where you need to spend. Um, because I think when it’s all in your head and you’re like, this is just a huge number, I can’t even imagine, I don’t wanna think about it. It just makes it that much more scary and the less likely you are to start planning.

Tonya: And I, I think this is true, whether you have a child with special needs or not.

Ann: Oh, absolutely.

Tonya: When you look at everything,

Ann: yes.

Tonya: It’s overwhelming.

Ann: Absolutely. Yeah. Absolutely.

Tonya: But even more so because we do know that we recognize we have extra expenses that are out there.

Ann: Mm-hmm.

Tonya: Um, and I, I wanna reinforce what you said about, um, when we, we may not like to think about when we’re gone, but you had talked about writing down.

Things like what, and I’m assuming you’re talking about what is the routine, what is

Ann: Yes,

Tonya: so that that transition works. Parents, a lot of you are already doing that to some extent. If your parent comes over to give you a time to go to an appointment for yourself, you’ve already kind of gone through this step.

Thinking through how, like what, what do you tell your mom when she comes to watch your child?

Ann: Mm-hmm.

Tonya: Or, or if, if, if you’re able to have a babysitter, maybe you have someone in your community who’s, who’s capable of coming in. Mm-hmm. Um, or if you have respite care, you’re transferring this information on a smaller scale already.

If you have that in writing. It’s already gotten you started. And so, so I think if you, if you think of it that way, you’re not thinking of the entire life. What do I put down exactly. In, in, in one sitting on the, on this paper.

Ann: Yes, exactly.

Tonya: And I know for me, I had, I had just journals for both the kids because at different times there were different medical issues that had to be followed.

Ann: Mm-hmm.

Tonya: And it helped me at least to know. That I wasn’t spending two hours having to transfer all this information.

Ann: Yes.

Tonya: It was just like a little flip, flip thing that if this happens, this is, this is what, what our next step is.

Ann: Exactly.

Tonya: And, and it had everyone’s phone numbers and, and doctors and all of that in there too.

Ann: Yeah.

Tonya: Thankfully never needed to be used while I was gone, but at least it was there.

Ann: Yeah, absolutely. So you’re doing this already and I, I think one of the things is, um. The one way to think about it is like, just start with what their favorite things are and like Yeah. What calms them down. I mean, you probably wrote this in your journals.

Um, you know, what medication they take, what foods they like, that sort of thing. And just starting there I think is really helpful.

Tonya: Yeah. If you’re involved in a church and you’re dropping them off in a, a daycare situation, you know, what are you telling them when you drop them off? You know, they have a lovey there, they have something that’s there.

So, so, uh, and, and not all of our families are in a situation where they can do that yet.

Ann: Mm-hmm.

Tonya: But many of them are where they, they are doing a handoff for at least a half hour to an hour maybe.

So I wanna take us back to a moment that a lot of our families have lived through, and that’s when you get a diagnosis.

You mentioned this just a minute ago. Yep. Suddenly everything that you thought your financial future looked like doesn’t fit anymore.

Ann: Mm-hmm.

Tonya: The college savings plan that you thought about, the retirement timeline, the budget that you built, none of it was designed for this that you’re facing now.

Ann: Mm-hmm.

Mm-hmm.

Tonya: In that moment, a lot of parents either go into full panic mode. Or they go completely numb and usually it’s one or the other initially, and then, then we pull from there.

Ann: Right, exactly.

Tonya: So neither of those are strategies. Mm-hmm. And, Ann, I want you to speak directly to that parent, um, specifically for that family who just received the diagnosis and is realizing that their entire financial plan needs to be rebuilt from the ground up.

Ann: Mm-hmm.

Tonya: What’s their first step? Not the whole plan, just the first step that they need to think about.

Ann: Great question. So I think, um, as I, as I mentioned before, the first thing I would do is just write things down and not even, not even just your current budget and your current income and your current benefits, but just write down all the questions that you have.

Tonya: Good idea.

Ann: Because again, I think when it’s all in your head and you’re just completely overwhelmed, especially when you’re emotional and overwhelmed. We can start to spin essentially and start to feel, um, like there really is no hope or there’s no next step that’s going to be helpful. Um, and so I think just writing down all the questions and figuring out, okay, where are the gaps?

If, if, um, we were to be spending money on resources, you know, is there something where we can start looking into public benefits? Is there something where, um. We can talk to someone within our community who knows more about special needs or, or daycares for special needs children or resources for special needs children.

Because I think, I think when you get a diagnosis, it’s of course super emotional, but then all the mind, all the, all the things that run through your head about what if this happens or what if this happens or how am I going to pay for this? I think as we talked about, it can be extremely overwhelming and people like you had, like you said, tend to avoid it.

But I think, and I, and I don’t wanna sound harsh, but I think one of the things that you have to remember is that not planning is a financial decision.

Tonya: Yeah.

Ann: And I think if. I wanna be sensitive to the fact that you as a special needs parent, you are surviving day to day. Like that is the goal. Like figuring out, okay, what am I going to do about this?

This happened. What happens if this happens? Again, those sort of things. It’s all about survival, but what I would like to encourage people to start considering is. Maybe the day to day would be a little bit easier to face if there’s one less thing that you have to worry about. And that would be a financial plan where you’re figuring out, here’s the savings that I have, here are the public benefits that we’re going to be leaning into.

Here are the tools and resources we can use as our child gets older. Older. So an ABLE Account, for example, um, I, I, I hate to say Special Needs Trusts, um, because I think people hear the word trust and they’re like, I don’t fly private. Like I don’t need a trust fund. But the reality is Special Needs Trusts are created specifically for families to have resources set aside for their loved one.

That doesn’t impact their eligibility for public benefits. And so I think just having that in place and it’s not something where you have to put a ton of money into it immediately. It’s something where you can grow it over time. Mm-hmm. Um, there’s also an option, um, for some families they find that.

Having a life insurance policy and having the Special Needs Trust listed as the beneficiary is also helpful. So again, you don’t have to be a millionaire during your lifetime, but you can leave proceeds from life insurance to your child in a Special Needs Trust that can then help care for them throughout their lifetime.

Tonya: Listeners, we have talked about ABLE Accounts before. We’ve talked about the trust before. I’ll link anything that we’ve covered in past interviews on these topics in the show notes. So if you wanna do a deeper dive, you can go in and hear some different experts coming in that have laid all of that out for us too.

 ‘Cause I think the more you hear this and the more different angles that you hear it from, the more it’s gonna make sense to you.

Ann: Yes. Yeah, absolutely.

Tonya: Alright, so talking about cost, um, and wise, we’re trying to think through like what we may have. I think most of us came in once, once we had that diagnosis, we knew there was gonna be some extra costs.

Mm-hmm. It kind of goes without saying, um, because most of them have some type of medical piece, whether it’s therapies or um, medical doctors or surgeries. Um, we expect the copays, we expect the things on that obvious list. What we don’t always expect are the costs that nobody warned us about. Mm-hmm. The ones that don’t show up on the brochure, they, they just quietly drain your account over time and then one day you look up and you wonder where’d all the money go to?

You know, it’s like that invisible tax that was there of raising a child with a disability. Um, so beyond the therapies and the copays, those costs that we expect, what are some of the financial drains that consistently blindside us?

Ann: You know, obviously there are a lot of providers out there and sometimes you find ones that work.

Um, well for you and then maybe they pivot and do something else, and then you’re left finding a new provider who might not take your insurance or might not take any insurance. And so I think one of the things that can be especially derailing is when you need a new provider or a new specialist, and it’s so specialized that.

They don’t take insurance, they only take cash, or they’re located in a whole other state and you have to travel to see them. Um, so I think that obviously adds a lot of complication and a lot of additional money on top of what you are already paying.

Tonya: Yeah. That was that you, you hit on part of that. I think sometimes it’s the travel.

Ann: Yes.

Tonya: Um, for some of our families, they have multiple children. So it may not be the cost of that copay, but it might be the cost of the babysitter.

Ann: Yes.

Tonya: For the other children while they’re going, um, there’s a lot of different things, specialized equipment. Um, there were things for my daughter who’s visually impaired that I was able to make at home.

Ann: Mm-hmm.

Tonya: Had I not been a crafty person, I was gonna have to find someone else who could help me do that.

Ann: Yes.

Tonya: Yeah. And, and make it for me. So, um, good point. So there may not always be things that are required. But if we’re going to give our children the best chance at fulfilling their path to their best potential, there are costs that are usually part part of that.

Ann: Yeah, absolutely. I think, I think specialized equipment is certainly one of those things where costs can start to creep up. I think the other thing too is having to make your home more accessible. Yes. Like, those are definitely costs that I think can, can arise and, and get rather large, rather quickly.

Tonya: And, and there, there’s one cost that I don’t think anyone really thinks about.

Um, and you, you may face this more just because of the diagnosis that you have within your family. Sometimes it’s easier to bring family celebrations to you than to take your family to grandma’s house. Mm-hmm. Or to aunt and uncle’s house.

Ann: Mm-hmm.

Tonya: And so now you have. The burden of the preparing the food, cleaning the house.

Yes. You know, and if you need to spend more time with your child, you may have to hire someone to help you with some of those things.

 We talked about, about isolation earlier.

Ann: Mm-hmm.

Tonya: The, the, the counter to that is staying isolated.

Ann: Right.

Tonya: But if you want to stay involved with family, sometimes. You may be in a situation where you’re better off if you say, why don’t you, come to us this time. Because then your child has a safe place they can go to.

They have their comforts around them, and you have all that equipment

Ann: mm-hmm.

Tonya: Already in the home.

Ann: Right.

Tonya: So monitors or whatever you may have.

Ann: Exactly.

Tonya: And when we talk about equipment, you’re right, some of our families have atrocious amounts of cost for equipment. And there’s not always organizations that can help with that.

Ann: Yes.

Tonya: So there are long waiting lists trying to get in to set some of that equipment.

Ann: Yes. Yeah. And I think that’s also where, you know, those parents groups can come in handy. I’m part of a parent group here in Colorado, and yes, you buy equipment for your child, but your child continues growing, so then you need more equipment.

And so I think within those parent groups. There can be the opportunity where you can say, I’m looking for X, and maybe someone has outgrown theirs and they’re looking to, to give it to somebody else. Um, so, you know, finding people who can help you with those resources because they’ve been there, um, and help alleviate that.

Tonya: I love that example. And listeners, if you’re in a situation where you have some equipment that you’re. Outgrowing, please look and see who’s out there.

Ann: Mm-hmm.

Tonya: Um, because, because you, you, you know what it takes to try to get it, and maybe it’ll help you with the, with the next piece. You’re, you’re, you’re looking for yourself.

Yeah. I know there are some limits legally as far as what can or can’t be sold.

Ann: Yes.

Tonya: Um, just because of medical equipment. Mm-hmm. And that, and that makes it a little bit harder, but you can always gift it.

Ann: Mm-hmm. Yes, exactly.

Tonya: So let’s change gears a little bit. Um, and this part, we’ve talked about grief before.

Mm-hmm. But there’s a specific kind of guilt that lives in special needs parents, and I wanna talk about that directly because, um, I don’t think we can cover it enough. And the guilt says if there’s a therapy and intervention, a program, a tool that could help my child, I have to try it right now. I don’t have time to wait.

I have to get there right now. And alongside that is another guilt. And it’s the one that says, I can’t put money in my own retirement when my child needs it today.

Ann: Yes.

Tonya: And both of these are real. Mm-hmm. We are, we’re parents. We love our children. We want what’s best for them, um, but they can drive families into a financial crisis.

So let’s talk about this. Families feel that they have to fund every therapy and intervention available mm-hmm. Right now. And that saving themselves is being selfish when their child has needs. How do we help a family? Hold both of those truths at the same time.

Ann: Sure. Yeah, that’s a, that’s a great question.

So I think one of the things that I wish someone would’ve told me when my son was diagnosed with autism is, okay, I know that you’re a fixer and you’re a helper and you just wanna fix everything and help everything and just have everything lined up. So you’ve got the therapies and you have the providers and you know who to call and you know who to reach out to in, in the event of X or Y happening.

And I think the first thing that I would say is just. Slow down. Like there, there is time because if you try to do everything all at once, you’re just going to make yourself crazy and maybe even make the wrong decision with the wrong provider. So again, I think leaning on your networks of friends, um, or other people who have been there and asking for referrals, you know, maybe that person who they refer you to doesn’t take your insurance, or maybe they don’t take any insurance at all.

But those people definitely know other people who do what they do, and they might know somebody who does take insurance or someone who does take your insurance. So I think, I think as parents of special needs children, it’s like it’s, it’s our responsibility to to solve everything right now.

Tonya: Right.

Ann: And need, and, and it does, it doesn’t work that way because you might ultimately be creating more work for yourself down the line.

And God knows we all have. Way too much work to do as it is. So I think, I think slowing down can be very helpful and I know, I know that that’s completely and totally against our nature as parents, but I think it’s kind of how we’ll keep ourselves sane in the long run and find the right solution for our child and for our family.

Um, what was the second part of your question?

Tonya: Um, as far as taking care of their own,

Ann: oh, their own retirement. Okay. Okay. Um, okay, so, so there’s obviously, um, a lot of things to consider when, when saving for your own retirement. I think, um, you definitely don’t want to neglect your retirement savings to support your child in the immediate term because we don’t know what the future.

Holds. Mm-hmm. And if you are taking money out of your retirement savings for today, you might actually need that retirement savings because your child might continue to live with you through their lifetime. And so I think there’s so much power and retirement savings, especially when it comes out, comes down to.

Getting a 401k match at work and maxing out your 401k at work, if you have the opportunity to do so, because you do wanna let that money grow. You don’t know what is coming down the pike in the future. And I think certainly the urgency of what is happening today can make it very tempting to tap into that money.

But in the longer term, you’re gonna want it there. So I think finding other ways. To fund today’s expenses. So I mentioned maxing out your 401k or contributing enough to get the employer match, if that’s an option for you. Um, but also looking into health savings accounts, like that’s another really great resource in terms of, um, tax advantages.

So you’re, so you’re setting aside money for your retirement, but then you’re also setting aside money. For medical costs. Um, so there’s different ways that you can make contributions that can potentially suit both needs.

Tonya: And I’m gonna finish this up by saying I caught it. Guilt. ’cause we do experience that feeling.

Mm-hmm. But parents, you’re not being selfish.

Ann: Ugh.

Tonya: By looking at your future financial security as well, you’re actually being more generous because you’re making sure that you can still be there for your child as long as you can. If you rob yourself of that, you’re not going to be able to be there to support them.

Ann: That’s exactly right. And I just, it’s so cliche, but it’s true. You have to put on your own mask first.

Tonya: Yeah, yeah. But in a panic. It’s really hard to do that. It’s, isn’t it?

Ann: It absolutely is. Yes. Yeah. You feel like you have to do everything right now, and there’s just not enough time and not enough money, but just slow down.

Tonya: In, in our community, and, and we have parents listening who have older children, we have parents who have just gotten a diagnosis, or they’re not even, they don’t have a diagnosis yet. They just have that first inkling of question and they’re, they’re finding us as they’re searching these different things.

Mm-hmm. Um, but within our community, we hear all the time that parents, they’ve been fighting for the child for years. Mm-hmm. They’re exhausted. They’re stretched thin. They don’t know. That there are financial tools specifically designed for their situation. Mm-hmm. And they’ve never been told about it.

Right. So we, we mentioned ABLE Accounts a while ago. Mm-hmm. We mentioned Special Needs Trust, Medicaid waivers are out there. Mm-hmm. SSI, um, depending on your child’s age, SSDI may an option.

Ann: Mm-hmm.

Tonya: Um, these aren’t just legal terms. They’re real resources that can change a family’s financial picture and a lot of our families simply are not accessing them.

 What do you feel are the most commonly overlooked financial tools and resources? Not necessarily with that list. There may be some others that I didn’t mention yet. And, um, what can families, how, how can they find out if they already qualify for them and why are there so many families that leave this on the table?

Ann: I think, you know, especially being in the financial services industry for as long as I have, there are so many acronyms.

Tonya: Yeah.

Ann: And trying to even remember what half of this stuff means. It is a full-time job unto itself. You have, you need a PhD. Um, so I think that is probably a deterrent for a lot of parents because it’s just like, what, what does all of this mean?

Um, I’m just still trying to figure out what this diagnosis means. Um, so I think it’s, it’s, it’s ultimately just mental overload. Um, but I think one of the things that I try to remind people is one of the best things that they can do as their child transitions to adulthood and turns 18 is applying for SSI, which is supplemental security income and there are obviously some, some, um, income and asset limits to that.

But if you do that as soon as they turn 18. I think it’s, it’s gonna help you in the long run because in most states, when you qualify for SSI, you then immediately qualify for Medicaid.

 Health expenses is really where that money drain starts.

And so if you can get your child, your loved one. On Medicaid, it’s probably gonna help you a lot down the road. And the reason why I encourage people to do it when their child turns 18 is because the older they get, the harder it is to qualify. So I would cover that base immediately, mark it on the calendar for their 18th birthday.

We’re gonna go apply for SSI and Medicaid. Um, and I think, I think that’s overlooked for a lot of people because they think, you know. I make too much money or how do I know if they’re going to qualify? You know, is our public benefits right for our family? And I think the thing to remember is when your, when your child or loved one turns 18, they’re an adult now.

And so their money in their assets are in their name. And so yes, by extension you might be able to help them financially. That doesn’t necessarily mean that they cannot qualify for benefits because they are their own person, uh, at this point in the eyes of the law.

Tonya: 18 is that magic number. Know parents, you know, 18, it, it’s a birthday. It’s a legal change in life. We, we know that no matter what the abilities of our child are, but in the special needs parenting world. It’s even more crucial ’cause a lot of things are happening at that point.

Ann: Yes.

Tonya: And early on we mentioned the ABLE Accounts.

Ann: Mm-hmm.

Tonya: We mentioned the um, the Special Needs Trust.

Ann: Mm-hmm.

Tonya: And I think it’s important that we understand why those two specific accounts are so important. And part of it is when that child turns 18. We want them to be able to qualify for SSI and Medicaid.

Can you tell me today? Now this is um, March of 2026, so if you’re listening to the six months from now or a year from now, things may have changed, but as of today, Ann, what are the numbers that our kids need to be under to be able to qualify for these, these benefits?

Ann: Well, I’m, I’m, I’m glad that you asked, and I, and I do get a little fired up about this, so just warning you

Tonya: and these numbers change too.

Ann: Yes, I know.

Tonya: So that’s what I’m saying. As of today, where are we?

Ann: Yeah. So as of today, March 24th, 2026, the asset limit for an individual with special needs to be able to qualify for SSI is $2,000. Total to their name. So if you think about if, if you think about them potentially having part-time work or maybe getting an inheritance from their grandparents, obviously an inheritance it’s, it’s very well intended.

It’s very kind. It’s very generous. But even if the grandparents leave their grandchild a thousand dollars. That jeopardizes their ability to access right benefits because the limit is, is 2000. And if they have more than 2000, the benefits are suspended. And I think, I think that 2000 number has not been updated since the HW Bush administration.

Um, so I don’t know if it’s gonna be updated anytime soon. Um, but, but that’s where we are. Uh, and so. That’s why it’s so important to use the, the financial tools that are available because you can set up an ABLE Account, you can set up an ABLE Account online, and it makes it possible for you to save for your loved one.

Um, and it doesn’t count towards that SSI asset limit as long as those. Those funds are used for, um, qualified disability expenses. So that’s everything from transportation, um, to housing, to education, to an in-home aide, um, whatever you need, whatever you need them for, as long as it’s a qualified disability, um, expense.

And so that way, you know, they’re still getting the public benefits, but they’re. They’re able to maintain the standard of living that they’ve come accustomed to living with their parents,

Tonya: because not all of our families have a diagnosis from the time the child’s born.

Ann: Correct.

Tonya: So we may have a five or 6-year-old now.

Ann: Mm-hmm.

Tonya: Who is just now being diagnosed and grandparents gave that child a gift when they were born for their college account.

Ann: Yep.

Tonya: They have a 529 account that has more than $2,000 in it.

Ann: Yep.

Tonya: And a 529 be transferred to an ABLE Account?

Ann: Yes. The assets from a 529 can be transferred into an ABLE Account.

Tonya: So if there’s too much in there and is there a cap on the ABLE Account right now?

Ann: So in, in most states, the cap, um, on, on an ABLE Account is a hundred thousand dollars.

Tonya: Okay. Okay. So more than likely that 5-year-old is not there yet Correct. In the college account, but Correct. If they’re, they may not have as many worries

Ann: Right.

Tonya: The kids, yes.

Ann: But they’ll have the worries if the money’s in the wrong place, so,

Tonya: yeah, exactly. Yeah. And that, it’s, it’s why I was thinking that and, and not all of us think of it that way.

Ann: Yeah.

Tonya: Because grandparents are very well-meaning. And a lot of times that’s where this extra money has come from.

Ann: Mm-hmm.

Tonya: Exactly. And um, and I think it’s important that our parents know how to talk to their parents about those trusts.

Ann: Yep.

Tonya: Because that’s a conversation grandma and grandpa may need to have to make sure that their financial paperwork is in order so that when the time comes. There’s not money given to, to little Johnny.

It’s given to his trust instead.

Ann: Yes, exactly.

Tonya: And um, and, and, and so there are ways to set this up parents. It’s just, and you may need some help with this, but at least we’re trying to give you the questions to start asking Yes. So you can get

Ann: exactly. Exactly. And so another, another resource that parents can use, um, is a third party, um, Special Needs Trust.

Uh, I don’t wanna go too far down the rabbit hole and bore your, bore your listeners, but there are essentially three different kinds of Special Needs Trust. There’s, uh, a first party Special Needs Trust, which essentially comes in if there is, um, say a settlement. If there was something that went wrong during birth, there’s a settlement with the hospital.

Those assets are technically in the name of the child. That’s where you would use the first party. Special Needs Trust, a third party Special Needs Trust is basically set up by that grandparent or set up. By that parent who wants to set aside funds, uh, for their loved one, not in their loved one’s name, so that they can still qualify, um, for public benefits.

And then the third one, um, is a Pooled Trust. And essentially what that is, is it’s, it’s, it’s a, it’s a collection of people who. Have funds in a trust, but they don’t necessarily have the resources to maintain a professional trustee for the duration, okay. Uh, of, of the trust. And so you put those funds into a pool trust with others, uh, who have disabilities, um, and special needs.

And then those funds are, are distributed, um, accordingly. So it kind of takes away that, that administrative expense that you would have with a third party Special Needs Trust. So that’s an option as well.

Tonya: So on a Pooled Trust, is the funds that that is allocated for your child, is it, does that money only go to that child?

Ann: So,

Tonya: or is it all pulled together and divided between everyone?

Ann: So the money, the money is allocated to that child, but in the event of the child’s death, the Pooled Trust keeps that money and then shares it with the remainders. Oh, okay. In the Pooled Trust? Yes.

Tonya: Going back to that, that 18 year.

Ann: Mm-hmm.

Tonya: Uh, magic age.

Ann: Yes.

Tonya: If our listeners are coming in and they have more than 10 years before their child’s going to hit 18, is there something they can do now before life gets in the way and it starts rushing at them at the end to start getting ready for that 18th birthday?

Ann: Great question. So if there are resource needs right now, there are Medicaid waivers.

Available, uh, through different states that essentially, that essentially allow for, for example, if your child is in a school district that isn’t able to accommodate their needs and they need to go to a private school to better accommodate their needs. For example, there’s a Medicaid waiver that’s associated with that.

So there, there are benefits and there are. What they call waivers, which I don’t know if the language necessarily makes sense, but I didn’t, I didn’t make the rules. Um, so there are benefits available through different Medicaid waivers and there are Medicaid waivers through, uh, each individual states as Medicaid is distributed, um, is allocated, I should say, at the state level.

Um, I think so. For example, in. In California, they use Medi-Cal, which is a little bit different. So sometimes the language is different, but there are waivers, uh, available in different states. I think the other thing, um, that I just wanna caution people on is there’s a lot of people, uh, applying for Medicaid waivers.

And so there might be a waiting list. In fact, there probably will be a, a waiting list. And another challenge that we’re obviously facing is. Budget cuts, um, across the country in terms of resources being allocated. So to answer your question, the child is not 18 yet. There are Medicaid waivers that can help, um, uh, supplement resources, but it is getting harder.

So

Tonya: I know in North Carolina where I’m sitting now mm-hmm. The average weight is about 10 years right now. And, um, and parents, if you’re not aware of it, once you get in there. Some of your physical needs can be covered with that, like diapers and things like that. Um, if, if not, not baby diapers, but if your child needs continuing, um, care like that, but you also may qualify for respite care.

Um, and so it is important if you, if your child qualifies, that you look into this and, and get on that list no matter what. It’s, I have heard that there are states out there where the wait list is not 10 years, but there are quite a few that are that long. Yeah. So, um, so if you, if you have any idea, I would look into that and go and get started with that, that, that process, even if you don’t use it, at least you’ve gotten.

Your, your foot in the door, you’re ready So that if you do face something where you need it, it’s, it’s ready to go.

Ann: Yeah. What, what is, what is the saying? If you don’t ask, you don’t get, so you might as well try.

Tonya: I wanna end our conversation somewhere that I think our community doesn’t go often enough, and that’s hope not toxic positivity, which is, is not what anyone ever likes.

Um, not everything’s gonna be fine, but real hope.

Ann: Mm-hmm.

Tonya: The kind that comes from actually knowing where you stand financially, having a plan and realizing that you do not have to choose between your child’s future and your own future. That two things can actually coexist. And I wanna give you a chance to speak to the parent who has been carrying this financial weight alone, maybe for years, and has forgotten what it feels like to breathe.

For those parents in our community who have been so deep in survival mode, that thinking about their finances, that thinking about their finances feels impossible. Can you share what you’ve seen happen for a family on the other side of that? All of that work? What does it actually look like, feel like when their special needs family finally gets their financial picture clear?

Ann: Great question. Um, so I, so it’s definitely, um, one of those things where, sorry, lemme move this, uh, out of the way and not mess up my sound. Um. So what I would say is that when I start with a special needs family and start working with them, I do prompt them to write everything down. So just give me a picture of where you are right now so that we can best work together.

And I think when you’ve written everything down, you can more easily identify where you have questions. And where you have gaps and where you might need the expertise of either a financial advisor or an attorney or another kind of consultant who can help you with these things. Um, I think it’s important for families to know, as I said before, you don’t have to hurry.

You can write down all of your questions and maybe not look at them again for a few months because life happens and things come up. But I think if you give yourself that 15 to 20 minutes to just get organized, it will pay off in in the long run. Um, you can figure out what questions you wanna ask. You can figure out where the gaps are, and then you can reach out to your mom group, to your dad group.

Ask them if they’ve ever had the same concerns. If they have somebody that they talk to, if they have a good attorney that they like to work with, so that you’re not completely flying blind and going down the Google rabbit hole like I did. And then I think, you know, again, it takes time. It has doesn’t have to be done to tomorrow.

You don’t have to be an expert in everything. So just know that there are people out there who can assist with these things, who have dedicated their entire careers to helping you with these kinds of things. Um, let them be the expert. You’re the expert on your kid. You know what your kid needs. You can focus there.

Just start by writing things down and then find people who can help because there are a lot of us.

Tonya: Perfect.

Ann: Good. Okay.

Tonya: So. Those that have been listening to us are gonna wanna know where, where they can find you, how can they connect with you, where, where are you online and what types of services do you offer?

Ann: People can find me via my website. It’s https://www.hestiawealthandwellness.com/. We’re also on Instagram @hestiawealth. TikTok @hestia.wealth, Facebook, Hestia Wealth & Wellness. And then, um, I am on LinkedIn, Ann Hynek and Hestia Wealth & Wellness is also on LinkedIn, so there’s a bunch of ways to get in touch.

Um, if you don’t wanna have a conversation with me and you just wanna start. Creating that list or building that list. Um, I actually created a, a clarity checklist, or at least I hope it brings clarity. So if you go to the website on the homepage, there’s a button in the upper right hand corner that says, start here, and you can download that checklist.

So it essentially gives you a template with those questions of where your benefits coming from now, what are the current expenses that you’re facing? Et cetera, et cetera. Um, it’s, it’s, I think it’s like three pages, but it’s, it’s that long because there are tables, so it’s not, you don’t have to fill the whole thing, so don’t be overwhelmed.

Um, but I, I definitely think it’ll help people at least to start to think about it, um, and start to identify the areas where they might need a little extra help or need to ask questions.

Tonya: And do you work, um, vir virtually, or in person or both?

Ann: So I am based in Colorado. Um, so people who are not located in Colorado, I work with, um, virtually, I work with people, uh, in, in all of the states, wherever, wherever they are.

Um, I offer consulting services. So if people are going through, say, one life transition where they just need help or they just need. A way to figure out, you know, what a Special Needs Trust could look like. Or maybe they only wanna talk about ABLE Accounts. Like that’s something that I can do. Um, I also work with families on a consulting basis to help them build.

That life plan. So creating that letter of intent, um, figuring out, you know, what specialists I can introduce them to. Um, with my son’s diagnosis, I’ve established a pretty vast network, um, of different, um, specialists and providers in, in Colorado and, and, um, California and Michigan. And so I. I think part of the value in working with me is I can introduce you to other people so that you’re not googling for, for additional help.

Right. So I, so I offer that, um, consulting piece. And then we also, um, offer investment management, um, under our platforms. So you can do the consulting with me or you can sign up to be, uh, an investment client. Um, we have an incredible chief investment officer who has been doing this for over 35 years. Um.

He’s very good. And, um, one of the added benefits of becoming an investment management client is that you get access to all of the consulting help, um, no matter when, no matter where.

Tonya: I will put the links for all of your contact information in the show notes.

 Thank you so much for sharing all of this with us. There’s, I think this is a topic that we need to, to address over and over again because one, as, as we said. The numbers change. Things change, but we also, as parents, we need time to digest it all. And it, it’s just so much that comes in. And if you’re not coming from a financial background, it can be so overwhelming.

And so I appreciate you breaking it down, helping us get a little more personal touch to this. And, sharing your level of expertise with us.

Ann: Oh, Tonya, it was my pleasure. Thank you so much for having me.

Tonya: To those of you listening, if today’s conversation felt like a mirror of your own life, please know you don’t have to carry this weight by yourself. As Ann shared, the first step isn’t fixing everything at once. It’s just making that first recalibration, starting with an inventory of where you are today and finding your people who truly understand this journey.

 If this episode spoke to you, please share it with another parent who might be feeling that hidden burnout today.

Let’s help each other move from just surviving to truly thriving. I’m Tonya Wollum. I’m glad you were here today, and I’ll see you next time.

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FAQ (Frequently Asked Questions):

1. What is the “Disability Squeeze” and why does it lead to financial burnout? The “Disability Squeeze” is the double-edged financial pressure unique to special needs families. It involves the high out-of-pocket costs for therapies, equipment, and medical care (the “squeeze” on expenses) combined with the reduced earning power of parents who must scale back work hours or leave the workforce to manage their child’s care (the “squeeze” on income). This constant state of financial survival leads to a specific “financial burnout” characterized by exhaustion, decision fatigue, and a feeling of hopelessness regarding the future.

2. Is it selfish to prioritize my retirement savings when my child has immediate needs? Absolutely not. In fact, your financial security is one of the greatest gifts you can give your child. If you do not have a stable retirement plan, the burden of your care may eventually fall on your child or their future support system. By ensuring you are financially independent in your later years, you protect your child’s future resources and ensure that you remain a strong, capable advocate for them as long as possible.

3. What is the very first step I should take after a new diagnosis? The first step is to take a “financial inventory” without judgment. Before making massive changes, document your current income, expenses, and immediate medical needs. Simultaneously, find your community. Connecting with other parents who have walked this path provides “social capital”—advice on which programs work, which grants are available, and how to navigate the system—which can save you thousands of dollars and hours of stress.

4. Do I need to be wealthy to set up a Special Needs Trust? This is one of the most common myths. You do not need a large sum of cash to start. Many families fund a Special Needs Trust (SNT) using life insurance policies. This ensures that even if you don’t have millions in the bank today, your child will have a dedicated pool of resources to provide for their needs without disqualifying them from essential government benefits like SSI or Medicaid.

5. Why is a “Care Plan” or “Playbook” considered a financial tool? A Care Plan (or Letter of Intent) is a financial safeguard because it reduces the “mental load” and prevents costly mistakes. It outlines exactly how your child’s life should be managed—from medical routines to social preferences. Without this “manual,” a future guardian might spend thousands on trial-and-error care. It ensures your financial resources are used exactly as you intended.

6. How do ABLE Accounts differ from Special Needs Trusts? An ABLE (Achieving a Better Life Experience) account is a tax-advantaged savings account for individuals with disabilities that began before age 26. It is often used for shorter-term goals or “spending money” because it is easily accessible. A Special Needs Trust is a more robust legal structure designed for long-term protection, larger assets (like an inheritance), and professional management. Most families benefit from using both in tandem.

7. Why do many parents leave public benefits “on the table”? Many families miss out on benefits like SSI (Supplemental Security Income), Medicaid waivers, or state-specific grants because the application process is intentionally complex and exhausting. Burnout makes it difficult to navigate the paperwork. However, these programs can often cover thousands of dollars in home modifications or respite care that families would otherwise pay for out-of-pocket.

8. What does “financial clarity” feel like for a special needs family? Financial clarity is the transition from “survival mode” to “stability.” It feels like being able to breathe again. It doesn’t mean you have unlimited money; it means you have a plan. When you know where the money is coming from for the next therapy and how the future is protected, you can stop “panic-googling” at 2:00 AM and start enjoying the happy moments with your child today.