Updated: Sep 28, 2021
Special Needs & Divorce [“Doc” Hunsley, SOAR Special Needs]
Hey guys, I’m Annie Allen, a Certified Divorce Coach® and RCS-D Divorce REALTOR® and your host for the Starting Over Stronger podcast. The show that’s all about bringing you the practical professional help you need as you divorce, and the hope that you can then create a life you’ll love. I don’t skim the surface around here.
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Episode Transcript. Listen to complete episode on your favorite podcast app or by navigating to the Podcast tab on this site.
Annie Allen: [00:01:52] Divorce is hard and for some families, it is significantly more complex because one or more of the children in the family has special needs. Today, my guest is SOAR founder, Stephen “Doc” Hunsley. He is here today to talk about the top 10 issues that families face with special needs who are also facing divorce.
Hello and welcome to the show, Doc.
Stephen “Doc” Hunsley: [00:02:17] Oh, thanks so much for having me. It’s my pleasure to be here.
Annie Allen: [00:02:20] Very good. Tell us a little bit about yourself.
Stephen “Doc” Hunsley: [00:02:22] Yes. Well, as you said, my name is Doc Hunsley. Doc’s my nickname. Everyone calls me Doc, because I’m actually a retired Pediatrician. Got sick from taking care of my patients and out on long-term disability.
But as a result of that, I’ve now founded SOAR Special Needs, and SOAR stands for Special Opportunities, Abilities, and Relationships. We transform the lives of special families by empowering them to be able to soar in their local and faith communities. And we answer the three main questions that every family with a disability has.
First question is, will my child ever be able to provide for themselves? Second question is, who’s going to take care of my child once I’m gone. And the third question is, who’s going to take care of me as a parent and a caregiver? And we answer all three of those questions with our current and future programming. We’re based in the greater Kansas city area, but we’ve actually become a national organization, thanks to, COVID and having to go virtual with everything. Actually not just national, but we’re global. We’re working throughout Canada, Brazil, Belize, Kenya, Japan, and Jericho.
Annie Allen: [00:03:19] Wow. Very good.
Well, I was going to start by asking you about your passion for special needs, but I think you’ve already kind of told us a little bit about that. But if you would just expand on where this passion came from, how it’s a part of your life, whether that’s personally or professionally or both, and, and what really led you from being a pediatrician to developing or being a part of SOAR?
Stephen “Doc” Hunsley: [00:03:39] Yeah. Thank you. So I’m extremely passionate about it. It comes from my family. My son Mark, my second son. I’m blessed where I’ve got three kids. And my second son Mark, he was born with Dravet syndrome. When he was eight months old he had his first seizure which lasted over four hours. And then fast forward when he was 18 months, we finally got the diagnosis of Dravet syndrome. It is a very rare genetic seizure disorder. And then by the time he was two, we got the diagnosis of Autism.. And my wife is also a Pediatrician and we both went from taking care of a lot of patients with special needs, but this was the first time in our life we finally understood just how difficult it is to be a (special needs) parent. It’s 24 /7/365 days. You never get a break.
In fact, I can’t tell you the number of times I’ve been out in public where I’ve had complete strangers stop me and tell me that I’m a bad parent or I’m a horrible parent because my son’s having an autistic meltdown. And they think it’s bad parenting, or I’ve had police officers threaten to arrest me or taze me because they think I’m harming my son when he’s actually having a meltdown and harming himself and I have to hold him. That’s everyday life for every family with special needs. And 10 years ago now, he (Mark) was cured of all this when he was born into heaven at the age of five and a half years. So we were blessed with him for five and a half years, learned all the highs and lows of being a parent then walked through the grief of losing a child with special needs.
And it was about 10-11 months after that, that we launched SOAR Special Needs. And our logo was green. The green in our logo is because of my son, Mark. That was his favorite color. So this is definitely his legacy that’s living on. And we do what we do because of what he’s taught us. I’m more passionate about what I’m doing today than I ever was about being a physician, but we are trying to help improve families’ lives in every way possible and help fight and be a voice and an advocate for them when they’re not able to.
Annie Allen: [00:05:27] Well, that’s amazing. Thank you very much for sharing that. And, it sounds like, and I’m sure that this is the case that you have a passion for helping special needs families so that they don’t ever have to face divorce. But you’ve probably inevitably also helped people and families with that dilemma.
Can you talk a little bit about your experiences professionally or otherwise that has led you to an understanding about this intersection of special needs and divorce?
Stephen “Doc” Hunsley: [00:05:55] Yeah, absolutely. So, unfortunately it is estimated that the divorce rate for families with special needs is around 90%. And if you add a medical illness on top of it, like seizures or diabetes, it jumps to 95%. And nobody talks about that. That is the same rate as some special athletes or combat war veterans. And there are wonderful programs out there for them, but there’s nothing out there for families with special needs.
And the big reason is you can’t just go out and get a neighbor girl to babysit for your child because it’s more complex and you need someone who fully understands what’s going on with your child to be able to provide care and give you that much needed break. And the stress is, like I said, 24/7/365. So, we work with a lot of families.
One of the reasons we provide respite, we call it SOARly Needed R&R because it’s so sorely needed. And we have had families who have come back and told us it’s the first time they’ve had dinner together alone in 18 years. They’ve got a child who’s 18 who has special needs and they haven’t done that.
I’ve had one mom and dad that came up to me, in fact, after one of our early ones and the dad stopped me and said it had been 12 years since they had dinner alone. But dad stopped, this was a Friday night and said, “Monday morning, I’ve got an appointment with my divorce attorney to draw divorce papers.”
His wife’s mouth dropped. She had no idea. But this is the first time in 12 years we’ve had dinner together. And I realized I still love my wife and if you promise that you’ll continue to do these respite nights and give us this much needed break, I’m going to postpone that divorce meeting.
Annie Allen: [00:07:31] Oh wow. That’s awesome.
Stephen “Doc” Hunsley: [00:07:33] Eight years later, he’s never had that appointment. So I know for a fact that we saved at least one marriage. And so we’re very key on that. At the same time, I’m also a pastor. I was a special needs pastor for eight years with this. I’ve been a children’s pastor. And so I’ve done a lot of counseling for families and a lot of marital counseling and gone through this and helped a lot of families through it. So I’ve also been able to come in with a counseling aspect with helping families go through the counseling and then even post, when they just can’t come together and a divorce is the ultimate decision for them.
So I’m passionate about trying to make the marriage work. I always think that’s the best for everyone involved and yeah, I think really the biggest part of it is that most of the time, these families just need the extra support, need the extra help and that’s where SOAR Special Needs comes in and we want to be able to help families. Wherever they’re located. We want to help.
Annie Allen: [00:08:28] Yeah. Well, that’s incredibly touching and it’s important work. And I agree with you. I, unfortunately, as a Certified Divorce Coach®, I live under this impression, unfortunately I think, that some people think I sort of advocate for divorce or that I am like a divorce cheerleader or something. And I mean, it couldn’t be more opposite. I’m very much an advocate for marriage and I believe it’s worth fighting for. I fought for my own for 10 years before I realized that actually the more healthy thing to do was to end the marriage. I think every single marriage deserves giving it all you’ve got. And I think it’s incredibly important in a special needs situation to have that support around the couples so that they can, you know, have a chance at investing in each other and in the marriage relationship because every relationship requires that.
So I think that’s a good starting point for this conversation. So, you had given me a list of the top 10 issues that you saw as important with regard to special needs divorce. So we’re just going to work through that list and I’m going to probably have some additional thoughts that I want to talk through with you after that.
Stephen “Doc” Hunsley: [00:09:37] Sure.
Annie Allen: [00:09:38] So the first one that you listed, of course, is one of the most important things that we always talk about with divorce. And that’s how to tell your child that a divorce is going to happen. So talk to us a little bit about your perspective on that with a special needs child.
Stephen “Doc” Hunsley: [00:09:51] Yeah, so it’s always hard to be able to share with the child when divorce happens, but when you are dealing with special needs, that even becomes harder.
So it’s very important that you and your spouse plan together what you’re going to say ahead of time and you present it in a united in general manner. And it’s best that you both are there together. The best thing in any relationship, any divorce situation is if you are able to continue to co-parent your child. That is what everyone always wants to happen.
So we don’t want just one parent to be the one, doing all the parenting. It’s always best to have a co-parenting with your ex or soon to be ex. So, you know, it’s good then to be able to have this shared communication right at the start. And that’s so important for the sake of your child.
Annie Allen: [00:10:43] Yeah.
Stephen “Doc” Hunsley: [00:10:44] So how you start it is basically calling a family meeting and you do it with both parents present and you do it either in the family house or in a familiar setting. I think a lot of mistakes are made sometimes that just one parent does it, or they try to go somewhere fun to try to make the impact not as much. And that just doesn’t work, especially when you’re dealing with special needs. They need to be comfortable and in a place where they’re able to do that. And then just indicate that separating is a choice that both the parents have made together. You do not need to offer any explanation of why. You’re just basically stating the facts that mom and dad have chosen to live in two different homes.
Here’s one of the keys though. Remain calm. By remaining calm, when you do this you’re able to help the kids remain calm. When you start getting anxious or amped up about it, your kids can pick up that energy and that can lead to worry. It can lead to uneasiness and be really difficult.
Annie Allen: [00:11:43] Yeah.
Stephen “Doc” Hunsley: [00:11:44] Now when we’re dealing with special needs.
One thing that’s going to be very important is, our individuals with special needs see everything in a black and white world. So we have to use brief concrete language when we talk to our child. And you know, basically convey that your child will spend time with each of you in both homes. Tell your child that both parents will always love them, will always care for them.
Let your child know that there’s nothing that they did or didn’t do because it was an adult decision. It has nothing to do with them. And then you can also just model simple feeling words. And don’t avoid the fact that this is a difficult time. You can simply say, you know, this makes me feel sad and even a little worried because it’s a change in our family.
It is healthy to let your kids see some emotion. It’s healthy to let them see that it’s hard. Because it’s going to be hard on you, but it’s also hard on your kids, but so many times we try to hide that. And we try to put on our superhero cape and be the superheroes. But kids don’t need that. Our kids need us to be mom or need us to be dad. Those are their real superheroes. And so we need to just do this all in a calming manner. And then just return to the fact that both parents will continue to love them. They’ll continue to care for them. And let them know about the things in their life, which will remain the same. You’ll still see your friends at school. You know, the kitty will now be at dad’s house or the dog will be at mom’s house. Letting them know what’s going to be there, but that’s how we start sharing this with them. Have it be simple, concise, but concrete, don’t go anywhere else with that. And that will help them in being able to understand.
Annie Allen: [00:13:31] Yeah, I like what you said about just not really sugarcoating it because I think it’s natural as a parent to want to focus on the positives with our kids irrespective of special needs or not. And the reality is that I think it is actually probably more beneficial for them to see authenticity in us and for them to know that this is hard for everybody. And we understand that and everything that they’re feeling is okay for them to feel.
And be there for each other and hold space for each other in whatever way that is. You know, it’s interesting that you pointed out that for a special needs child, it would be really important to have that conversation in a comfortable and familiar environment because I have actually consulted with, and I think it was on an earlier podcast episode of the show, a therapist was talking about how to tell the kids, and it was her recommendation to have the conversation somewhere outside of the home for the very purpose of the fact that, that the memory of being told that never leaves you.
It is one of those moments like 9/11. You will never forget that moment. And you can have all these like negative emotions and situations where if it’s in your bedroom or something, you don’t want that there. And so it’s, it is interesting that it is actually the opposite for a special needs child.
Stephen “Doc” Hunsley: [00:14:51] Right. Now I would not recommend doing it in the bedroom. I agree with that. You know, you can have it in the family room or somewhere, but you want them somewhere where they’re going to still be able to find comfort. But the thing we have to remember with individual special needs is they’re creatures of routine.
They have a hard time understanding some things and get it in black and white, and if you take them to another place or something, there may be so many other distractions going on that they can’t hear what you’re saying. They can’t understand what you’re saying. And so it’s going to be completely missed.
So if you have them where they’re going to be comfortable, they’re going to understand. They also then have that baseline for them. And they’re not going to be amped up.
Annie Allen: [00:15:34] Right.
Stephen “Doc” Hunsley: [00:15:35] So, a child with special needs. Let’s say someone who has Autism. You’re also gonna want to make sure you pick a time where they’re doing well. You don’t want, well every parent knows when their child is not in their best area or best mood, right?
Annie Allen: [00:15:48] Right.
Stephen “Doc” Hunsley: [00:15:49] So you want to pick a time where you think they’re going to be able to listen a little bit better. But having that in a family room or going down to the basement doing that, but yeah, I definitely wouldn’t do it in the bedroom. You want to let them have their own space. So this would be wherever the family space could be and allow them to be able to focus and just be relaxed to be able to hear what you’re trying to tell them.
Annie Allen: [00:16:14] Yeah, very good. And number two you had mentioned was that kids with special needs will have a harder time adjusting to the transition of divorce even than kids without special needs. (nd it’s even very difficult for them) so talk to us a little bit about that.
Stephen “Doc” Hunsley: [00:16:28] Yeah. So, you know, like you said, for any child, divorce is always hard and just trying to transition and that mid-adjustment is always difficult. But when you are dealing with a child with special needs, the thing that we have to remember is kids with special needs often rely heavily on routine and their entire routine has been destroyed.
So we have to anticipate adjustment issues. It will happen. They may be acting out. There may be regression in different ways. They may lash out at a parent that’s present. We can’t take any of these, you know, personally. It is just their reactions to trying to adjust in things being different. You just stripped away all the routine for a child who thoroughly depends on routine.
Annie Allen: [00:17:16] Right.
Stephen “Doc” Hunsley: [00:17:17] So we have to expect big emotions and we cannot try to diminish our child’s feelings. So many times parents tried to say, “Oh, our child doesn’t really feel like that. They can have these big feelings or because they have special needs. They don’t get these big mood swings.”
Oh yes, they do. They’re no different than you and I, when it comes to emotions and all that. So, expect big emotional swings and that’s okay. And letting them know, “Hey, Johnny or Sally it’s okay that you’re feeling like this.”
Annie Allen: [00:17:49] Yeah.
Stephen “Doc” Hunsley: [00:17:50] For a child with special needs, it may also be better to make fewer changes in a schedule and setting especially during a school year.
So parents might arrange longer visits at each house instead of shorter visits; a frequent change, just so you can try to maintain some routine there or you can also offer reassurance and reminders that both parents still loved them and maintain constant loving support for them. That’s fine.
Annie Allen: [00:18:17] Yeah, you got to say that a hundred times. I can’t overstate it.
Stephen “Doc” Hunsley: [00:18:23] Not at all.
Annie Allen: [00:18:24] Yeah. And you know, to that point, you really have to almost, I think it would be helpful anyway, to have like a list. I would sit down and make a list of all the things that are gonna stay the same and emphasize those over and over and over again, to help with that adjustment period.
Stephen “Doc” Hunsley: [00:18:42] Absolutely.
Annie Allen: [00:18:42] And work hard as a couple to make as many things stay the same as humanly possible.
Stephen “Doc” Hunsley: [00:18:47] Right. And you can even put those on a board, put them up. If you’ve got a child who’s non-verbal, you can make pictures of those things. So they can kind of see a social story that would explain that and do that.
And so those are all very helpful for a child to understand. Here’s a couple more things on here. One real big thing for parents that we have to address on this
We all know that children with special needs can have tantrums. They can have meltdowns. Do not assume that every tantrum or whenever they’re upset is about the divorce.
It’s not. I’ve worked with too many parents that they start getting wrapped up now that every meltdown is because of the divorce. And so, you know, they tried to over compensate with that. It may just be an autistic meltdown. It just may be they’re having a bad day. So, you may want to still see, you know, keep your responses to the unwanted behavior that you’re observing. For instance, if they’re having a meltdown, you may sit there and say, “Hey, you’re upset that you’re having to go to bed and can’t finish the movie” rather than saying, “I know you’re upset that you can’t see mommy tonight.”
Annie Allen: [00:19:56] Yeah.
Stephen “Doc” Hunsley: [00:19:58] It probably has nothing to do with mommy. It may have to do with the fact that they can’t watch that movie.
So we can’t make those jumps all the time. One of the big things that really helps kids through this though, especially when they go from house to house is if they can have a transitional object, like a blanket or a toy that will help them with that, that just kind of gives them that comfort to help out as they move through things.
And so those are, they’re very helpful when, when working through that. You know, the thing that I’d really encourage to help with some consistency, if the child is staying with mom, It’s absolutely okay to schedule some FaceTime or zoom where they can still relate and talk with dad.
And if not daily, at least every other day, just so they can still see that. A lot of times they can’t understand why is daddy not in the house. It’s going to take a while for them to actually realize that and understand that. And so by doing that, that will really help with that. Another way you can keep that connection going is with all the therapy sessions that happen in events at school.
Some parents decide that the non-custodial parent will be the one that takes them to all the therapies so that they are able to experience both parents through their regular routines. But we need to know that you will have changes in sleep. There will be changes with their eating and play. They may have some regression.
So don’t be alarmed about it. Ask teachers to keep you up to date on how things are going, ask them to help with that. But know, as you try to maintain stability, give them that routine back, they’re going to create a new routine and that will equalize again, it’s not there for the long haul. And so those are the important things.
And one of the most important things to say is you got to find support for you as parents, So, trying to get other parents to help out with that too is great. And one thing that’s very helpful is something that’s called ‘a co-parenting therapist’. They can actually help you when you’re struggling with your ex about making parenting decisions and communicating with your ex. They can guide you through what’s working out in parenting challenges in a neutral therapeutic setting.
And so many times, mom and dad can start fighting about parenting decisions. And don’t realize they’re harming their child. So if you just take that step back and say, “Hey, we both love our child. Let’s do what’s right for them. Let’s do that.” And I’d say after the divorce, if you’re seeing behavioral and emotional changes persist for six or eight weeks, that’s when you want to get professional guidance.
And so ask your child’s pediatrician to seek a consultation and get a child therapist to help. Usually it’s going to take six to eight weeks to be able to have that new adjustment start taking.
Annie Allen: [00:22:40] Yeah, for sure. Well, and you know, co-parenting counseling is important really in any difficult setting of divorce, so certainly special needs is going to require that.
And it’s interesting, you know, you point out, there’s such a need for respite care during the marriage, and that doesn’t really change as a divorce happens or after. You may have a little bit more respite just by the fact that there’s a split in parenting time, but that doesn’t mean you’re not going to continue to have that need.
So that’s an excellent point. Well, let’s transition a little bit now from some of the emotional aspects to more of the practical, legal matters of divorce that are affected by special needs. And the first one that you have listed here is child support calculations being different. And I know that child support charts never really address the extra expenses of a child’s special needs. What else are you seeing in that?
Stephen “Doc” Hunsley: [00:23:33] Yeah. So the first thing we need to realize is that more care is always required in daily life or individuals’ special needs than it is for neuro-typical kids. And so you’ve got to take into account everything that they will require. That means their physical and occupational therapy, speech therapy, behavior therapy, medications, medical bills, medical procedures they may need to have, food or for special diets that your child may require, special medical equipment that your child may use. And remember, health insurance usually does not cover a hundred percent of any of these things. So usually there’s a large percent; home modifications may be required as your child becomes older.
You may, if they’re in a wheelchair, they may have to put lifts in the house. That’s going to be able to lift them because as it may be okay, when your child’s five years old you can move them around. But once they’re 15 years old and they’re six, three and 220 pounds, you’re not going to be able to pick them up anymore.
So that’s expensive. And then you’re talking about, you know, sensory items and special schooling and transportation, afterschool programs. Not to mention, again we’re going to talk about the occasional respite care that is needed for the caregiver. And then we’re dealing now with long-term care. You’ve got to talk through housing as they become adults and parents aren’t going to always be able to take care of our kids. so there will be a day where the parent is unable to take care of the kid and they have to figure out what to do.
So that’s what makes childcare support different. Most of the time childcare support stops at the age of 18. That is not the case when it comes to an individual’s special needs. Childcare support should last for the life of that child. And that’s usually what happens when you’re talking with the judge and working with that.
So it also means that support payments are usually significantly higher. Also the other thing we have to remember is one parent usually has to give up all monetary benefits of employment outside the home to be able to care for the child. So as a result, you end up then with the spousal support to be able to manage them in a full-time custodial manner.
And so that affects it as well. So these are all things that will actually change how childcare support will actually be figured out.
Annie Allen: [00:27:08] What about the child’s eligibility for public benefits now or later? Well, is that something that should be addressed in the child support discussion?
Stephen “Doc” Hunsley: [00:27:17] Absolutely. So that will be a part of it and it actually is more of a concern on how the child support payments are being made.
And that’s one thing I’ve got here a little later, but child support payments by the judge should be paid into a special needs trust. They cannot go to the child or go directly to the parent because as soon as they do that counts as income, and in order for a child to receive social security SSI (Supplemental Security Income), some are going to be eligible before 18 and all of them will be eligible after the age of 18.
That has to go into the special needs trust and then go to the parent as a trustee, that way it will not affect the income and they’ll be able to get it. So that has to be taken into account with it. And also when the parents start receiving social security, some of that can also be earmarked for their child.
And so that can be taken into account as well, as the parents age.
Annie Allen: [00:28:17] Okay. Do you know if any of the child’s entitlements would be at risk of forfeiture as a result of divorce?
Stephen “Doc” Hunsley: [00:28:23] Not that I’m aware of.
Annie Allen: [00:28:25] It might be more of a legal question.
Stephen “Doc” Hunsley: [00:28:27] Yeah, it is. I’d have to defer that to the attorney. I think the only risk of forfeiture is when the payments come in wrong and the money’s going to the parent directly or go to the child directly and that affects the income and makes the child no longer eligible.
And so that’s why it really becomes so important to have special needs trust in the picture, if a parent has never done that, now’s the time to make sure you have to have that in place.
Annie Allen: [00:28:54] Okay. And I’m going to jump over one of your points to that you have special needs trust as one of your bullet points. So is there more, on that we need to talk about?
Stephen “Doc” Hunsley: [00:29:02] Yeah. So a couple of things, you know, so estate planning, when you’re dealing with a child with special needs. Estate planning is so vitally important because that’s what’s required to ensure your child can inherit from both parents to preserve any government benefits, as well as any other resources they may be entitled to.
So, you know, in a special needs trust money can actually be earmarked for the child’s benefit and placed into that account and managed by the child’s trustee which is usually the parent. And the trustee then is responsible for distributing that money to the child that’s needed. So again, like I said, the childcare support has to go here, without that they could end up losing all those benefits. So you really need to make sure you go through an attorney, have that set up and have that done right. But it’s vital that you get a special needs trust set up.
Annie Allen: [00:29:50] Do you know? I did a little bit of research, so I know just enough to be dangerous. What is conservatorship and how does it address control over potential issues like this?
Stephen “Doc” Hunsley: [00:30:00] Yeah, so I can’t go into all the details with that because that’s a whole another kind of warms you up if I may say. Guardianship is a big one that parents need to talk about. And that’s one of the other points.
I’ve got there too. And let’s go ahead and jump to guardianship. So guardianship parents need to decide who will become the child’s legal guardian. If the child requires care beyond the age of 18. Okay. And with that it’s where the guardian will be responsible for all decisions concerning that child.
They need to decide ahead of time who that guardian will be. And not only that, who will pay for it because that’s, it’s not necessarily cheap with it and you want to do it before they turn 18. I have seen situations where parents haven’t gotten guardianship for their kids and then their child is 22 and something’s going on which they don’t understand, and they can’t understand how they need to make a decision for the medical treatment. But they have to be the one making that decision because there’s no guardianship and the parent has no right to say yes, they have to have this done. And so conservatorship, and I’m just going to have to defer on, on this because I don’t understand all the legal
Annie Allen: [00:31:14] Okay. It is a legal issue.
Stephen “Doc” Hunsley: [00:31:16] And I’m going to have to defer to an attorney on that, but that digs a little bit deeper.
Annie Allen: [00:31:19] Right. And I know there’s tons of different facets of that with regard to the child’s government and private agency, benefits, employment, recreation, social skills, independent living, custodial care, and all of that.
And I think a good recommendation that I did see was that your divorce attorney probably needs to consult with a special needs attorney.
Stephen “Doc” Hunsley: [00:31:39] Absolutely.
Annie Allen: [00:31:40] Do you think they normally do that or would a client need to ask for it?
Stephen “Doc” Hunsley: [00:31:44] I think you need to ask for it. Most divorce attorneys aren’t going to think about that.
Annie Allen: [00:31:48] Okay.
Stephen “Doc” Hunsley: [00:31:49] So as a parent, you really need to make sure you have a special needs attorney who can do that. And you want a special needs trust and for guardianship, you want someone who does this on a regular basis for special needs, because there are so many different laws affecting it. You don’t want just anybody.
Annie Allen: [00:32:08] Right.
Stephen “Doc” Hunsley: [00:32:09] So that’s why it’s so important to have someone who just does this.
Annie Allen: [00:32:12] Yeah. You know, and on that note conversations that you’re going to be having with your attorney with regard to the fact that you have a special needs child. I think one thing that came up in what I was reading was with regard to visitation and custody, being one of your points you don’t just tell your attorney about your child’s diagnosis.
You have to walk them through a day in the life of your child so that they are aware of all of the day-to-day challenges. Everything that plays into custody, parenting time, support and all of those conversations.
Stephen “Doc” Hunsley: [00:32:44] I’m a hundred percent agree. So, most people don’t realize what the day to day is for a child with special needs.
You know, I’ve got friends who have a 40 year old adult son who still lives with them still with special needs. And their mom was out to dinner. With one of her best friends of 40 years. And she said, I’m sorry, I’ve got to go back home and bathe him. She was like, he’s 40 years old. What do you mean you have to shower him? He should be able to do that on his own. Well, no, that’s part of my routine. I have to shower him. And not only that I have to wipe his rear end every time too. And most people just don’t understand that. Being able to walk the attorney through everything that’s required is so important with it. And here’s the other thing you have to make sure you bring up the fact that you have a child with special needs.
Annie Allen: [00:33:32] Yeah.
Stephen “Doc” Hunsley: [00:33:33] There are times when people haven’t brought that up. And it’s just like, “oh, well, we’ll work it out.” But you need to have that as we talk through that. So yeah, with the whole visitation and custody, you always want to focus on what is best for the child’s interests and that’s key. We all want that. But it becomes rare, very difficult, like you said.
Because each parent you have to focus on all the different factors. Each parent’s ability to understand the needs of their child is different. One parent may have more experience or training regarding the child’s medical needs. Also each parent’s willingness to meet the needs of their child.
Understand, parents’ work schedules may prevent care for the child’s needs, also the stability of each parent’s home or environments. Here’s the other one that’s forgotten a lot, the preference of the child or the child’s needs for continuity. The child may be more comfortable with one parent. And then also each parent’s willingness to encourage a positive relationship with the other parent.
Annie Allen: [00:34:33] Yeah.
Stephen “Doc” Hunsley: [00:34:34] And the child’s relationship with each parent and the siblings or other family members, all needs to be able to be taken into account. And then one other that’s forgotten a lot is the child’s ability to travel. It may not be feasible to actually have the child travel from one place to another. And so you’ve got to understand all that, but when you’re making these legal custody decisions, you also have to understand the child’s medical care, their daily needs, like you said, their education, choosing a school, attending those meetings, their social opportunities.
You need to make sure, if there’s medical equipment needed at one home, it has to be all at the other home too. You need to duplicate everything there is. So just working through all that doubles of everything. And then another big thing is and I know it’s done a lot in many different divorces, but especially important now in a divorce with a child with special needs, you really need to develop a parenting plan. And again, the more detailed, this is the better. There’s no such thing as a too detailed parenting plan. You have to account for as many possibilities now so that you can prevent any miscommunications or disagreements down the road.
So you know, what do you want to make sure you include in there, will one parent continue to care for your child full time? What parenting schedule will best support? to do with that? Who will share the medical decision-making authority? Will one parent have the final say? Will that be joint?
What will happen if the child needs full-time care going into adulthood? How do you handle that? How do you accommodate in or pay for additional therapy that your child may need? Like occupational therapy, language or sensory assistance. And then how do you handle urgent parenting disputes? How will they be resolved?
Having that put into the parenting plan, that if we have disputes, we will get a co-parenting therapist to help or anything. So we can avoid possible litigation in these high conflict situations.
Annie Allen: [00:36:27] Everything in the plan and a plan for every single thing, not just now, but you know, at the age of transition into adulthood, which may not look the same for your child in a special needs situation.
There’s so many factors it’s really hard to cover them all. I mean, you’ve hit on all the same ones I was thinking of. And one in particular that was a question that came up in my mind is, is whether or not 50:50 is even possible or desirable or beneficial for the child. And not just for emotional reasons or practicality as far as which parent might have a better handle on, you know, the needs of the special needs child.
But even just the practical matters, maybe it’s not even affordable or feasible for there to be doubles of some of the things. Maybe there’s a special van that has to be required and it costs tens of thousands of dollars or something. And it’s just not even feasible to have two of those. So things have to be done differently.
And it’s just kind of a common thought when you really get into the details of any divorce. There’s so many factors. It’s like uprooting a hundred year old tree, the roots go everywhere. And it’s like really impossible to try to think of everything, but you have to. And so it’s helpful to have a coach and I actually don’t really work with, but I know of several certified divorce coaches who have come through a special needs divorce situation and would be an excellent resource for someone in this situation.
I wouldn’t even place myself in that role because of not having lived it. I don’t feel I would be the right person for someone in that situation. But having a certified divorce coach as you go through a special needs divorce, I think would be even more important than having a coach in a normal divorce situation.
And I don’t think it can be understated how much help that provides to people. And so
Stephen “Doc” Hunsley: [00:38:22] I’m sorry. I have to say a couple of things.
Annie Allen: [00:38:24] Oh sure.
Stephen “Doc” Hunsley: [00:38:25] Piggybacking on what you were saying with, you know, the 50:50, and that sometimes you have to be creative in the sense, think outside the box. I know one family that I’ve worked with, for instance, that they had exactly that their child was so complex, so complicated that there was no way they could afford to have equipment at both houses. It’s just impossible to do that. Moving the child is also extremely difficult. And so they did a very unique situation that I thought was ingenious. And it shows how, if you really put the child’s best interests to effect, how you can find things at work. Mom has the house with the child in and she has the child most of the time. Mom is with him Monday through Friday. Well, they don’t move the child instead on the weekend. Mom and dad’s switch houses. Mom goes to dad’s apartment and lives in his apartment on the weekends, and dad comes and lives in the house. So the child has stability, and has everything he needs there.
Annie Allen: [00:39:26] Yeah.
Stephen “Doc” Hunsley: [00:39:27] Dad’s able to take care of him and actually still be a part of his life. And you know, and dad’s got a two bedroom apartment, so mom’s got her own room and she will keep her things there. I thought that was an extremely creative way to handle some very difficult situations that you have here. But again, what is really required in that, and you have to have communication and being able to work with one another.
Annie Allen: [00:39:51] Right. And two very mature individuals. (Ha-Ha)
Stephen “Doc” Hunsley: [00:39:54] Absolutely. I know that’s not going to work with everyone. Unfortunately what I see far too many times is when there is a divorce, the overwhelming majority of time one spouse just completely checks out and wants nothing to do with it.
Annie Allen: [00:40:09] Yeah, I was going to hit on that later.
Stephen “Doc” Hunsley: [00:40:11] And so that’s a really hard thing.
And that’s why it’s so important to be able to find respite and other things, because most of the time and not always, but I’ll say the overwhelming majority of the time it’s mom that ends up with the kids. And has everything on her own and she doesn’t have any break whatsoever. That’s the other thing we do have to be aware of and really talk through.
Annie Allen: [00:40:31] Yeah.
Now that scenario that you were describing earlier is actually a thing called nesting. I don’t know if you’ve ever heard that or not, but leaving the child in place while the parents rotate. Living in that family home is a thing called nesting and the jury is actually still out from what I’ve heard from therapists on whether or not that’s actually psychologically beneficial for the typical child.
Obviously a special needs child. It may be a very different outcome if they were to do studies on that. But the thought is that for the typical child, what we’re doing is trying to ease the blow. And keep as much in place as possible and what we are actually probably more beneficially doing for them would be letting them see that there are now going to be two different homes, but we can make that good rather than kind of the pseudo world which isn’t really reality.
And yet, like I said, obviously it’s for a special needs child. There are very different challenges and processes in place and you may be right. That’s an ideal situation, at least during the course of the divorce while everything’s being figured out. And maybe for a few years after an adjustment and then maybe they’re able to make a different kind of transition after that.
Stephen “Doc” Hunsley: [00:41:47] Right. Yeah.
Annie Allen: [00:41:47] So I don’t think I’ve had any other thoughts as far as… well one other one actually on visitation and custody is on how the first right of refusal plays into parenting time. Are you familiar with that?
Stephen “Doc” Hunsley: [00:42:00] A little bit with that. Haven’t had much experience with it, to be honest with you. So
Annie Allen: [00:42:06] It would be something just too, for listeners to consider how it might factor in, because generally speaking in divorce you can negotiate in the settlement or in the terms of your agreement that each parent would have first right of refusal. So if on your parenting time, you want to go on vacation or do something one evening that doesn’t involve the child or children that you would consult with their other parent first, before you would hire another babysitter.
And so that obviously becomes a very tricky thing when we’re dealing with maybe accessibility issues or emotional issues with a special needs child. So just something to keep in mind.
Stephen “Doc” Hunsley: [00:42:41] Absolutely. I think that’s important to have there. Again, it goes back to respect. The thing I’d say to you and your ex may not, obviously you’re breaking up cause you could have realised the problems and you can’t work well together.
But we still need to be able to respect one another and be able to work with one another and do what’s best for our kids. And I think that first right of refusal is a very important thing to be able to do to show that respect to one another and, and continue to care for our children.
Annie Allen: [00:43:10] Yeah. And I think, you know, you hit on it earlier and I think we really need to talk about it because there is a really unfortunate reality that sometimes that’s just not possible in the telling of the child and in the decision for divorce.
And in so many ways just co-parenting after one party is just not a party. They’ve removed themselves from the situation either emotionally or physically, and that changes all of this. And so, I don’t know what really we can say about that other than just to be aware that, you know, that is going to change everything we’re telling you about all of these things.
And it’s something that we recognize is a very unique and extreme challenge. What would you say to that?
Stephen “Doc” Hunsley: [00:43:53] Absolutely. It’s a huge thing. The best advice I could ever give a parent who finds themselves alone in the situation now, you know, on, on that island, trying to do all the parenting themselves, realize you don’t have to do this alone, you know, ask for help, reach out to help.
There are organizations out there who would love to help you SOAR Special Needs we are one of them, just being able to provide respite is a huge thing that is vital. Talking to other parents, that’s so vital being able to talk to other parents to see what they’re doing or how they cope with something.
Don’t feel like you have to try to figure everything out and conquer it all on your own. There are others who have walked before you and you can rely on them and they want to help you. And it’s one of the things I’ve learned, especially in the special needs community. It truly is a family that these parents will bond together.
These moms are absolutely amazing. They will interlock arms with one another and help pick up another mom and help them out any way they can, even if things are breaking loose in their household. They’ll do what they can to help another one out. So don’t ever hesitate to ask for help. Don’t ever feel like you can’t do that.
You can. And, don’t feel like someone’s been looking down on you. No, one’s going to look down. It’s part of life. We
want to be able to help you through that.
Annie Allen: [00:45:12] We always judge ourselves more harshly than anyone else does and think we should be able to handle it, but divorce is hard without this. And so certainly more so with it. And I think it’s amazing that people come together and co-parent together when needed. That’s amazing.
So one of your other points was that SSI payments may be in danger, and I think we may have hit on that, but is there anything more to say about that?
Stephen “Doc” Hunsley: [00:45:33] Yeah. I think we kind of were talking about that, but yes. You want to make sure that the child does not receive those payments incorrectly that they end up going to the special needs trust. Again, if they end up going to the child directly, they could end up losing those benefits. Because that counts as an income and a child, you know, individual, it depends on each place.
But if I rememb
er right, it’s $2,000, so it doesn’t take much to disqualify it. So you gotta really make sure everything’s going to the trust in that way it’s safe. And that’s why these trusts were graded to protect the benefits and protect these kids, to help everything remain intact.
Annie Allen: [00:46:11] And on a similar note, health insurance coverage is inevitably going to be in danger and or changing possibly significantly. What kind of special considerations should be considered there?
Stephen “Doc” Hunsley: [00:46:23] Yeah. So health insurance, this is one that’s forgotten about a lot, but this is super important because it’s always important for any child, but now when you’re dealing with a child with special needs, even a single day of lapsed coverage could be a disaster.
Because they care for their needs, their needs are so extensive. So you may need to compare plans, each party figures out who needs to cover the costs and everything, and what works best. Here’s one thing I need to share is I’ve had the situation over and over and over with families. Frequently the insurance is under one parent. And through that, that parent size, because these insurance rates will go up every single year. It’s not cheap to have a child with special needs on insurance. So they’ll shop and find new insura
nce. They will do that without talking to their ex. And find out if all the specialists are covered, their therapies are covered and just switch policies because it’s cheaper insurance without getting all the information.
And then what you end up doing is allowing your child to go to see the doctor only to find out they can’t get their therapies. They can’t see the doctor. Oh. And their medications aren’t paid for. And all of a sudden, now there’s a $15,000 bill coming in and actually much more expensive or much more harmful.
So please! I fully understand trying to find the most cost effective insurance, but you have to have that communication to make sure your child’s specialists and therapies are covered. Otherwise, you’re going to see a lapse in there that’s desperately needed for them. You don’t want that.
Annie Allen: [00:47:56] Yeah. And I mean, and that’s true with any insurance change, a cheaper premium does not mean… you’re not always comparing apples and apples. You’ve got to understand what the policy coverage is to know whether or not you’re actually saving money or getting ready to spend a whole lot more. So I have seen where one of my divorce coaching clients had a special needs child and she had to basically negotiate for keeping the child on the soon to be ex’s plan.
I don’t remember now what all the particulars were, but I remember that it was partly bad. There’s just a lot of different fact
ors to consider as to whether or not it’s even possible to make a change from one parent to the other, for health insurance coverage, or if it even makes sense to and how you know, spousal or child support payments could be adjusted for those differences.
So those are important things to keep in mind. And on that note, life insurance coverage is a factor as well. How are we at risk there?
Stephen “Doc” Hunsley: [00:48:52] Yeah. And so this now is not just important for mom and dad. This is also important for grandpa and grandma because frequently grandpa and grandma will list their grandkids on their life insurance policy.
Annie Allen: [00:49:03] Okay.
Stephen “Doc” Hunsley: [00:49:04] If that payment goes directly to the child, they’re going to lose all their SSI ability and everything else. So again, this has to now go to their special needs trust and you name it through a special needs trust. So that again becomes super important with this, but it’s also vital that you have life insurance.
Many parents don’t even think about life insurance. You know, things are so expensive, but life insurance, this is how you ensure that your child with special needs is going to be able to be financially supported when on the unfortunate event that you or your ex passes away. So it ensures that they’re going to be cared for into their adulthood and beyond with that.
So, you know, yo
u need to make sure it’s listed, goes into their trust just to be able to help protect them through that as a benefit instead of going directly to them. I cannot tell you the number of people who have lost benefits because grandpa and grandma tried to do a good thing, and it backfired, they didn’t know. So it’s important grandpa, grandma, aunts, and uncles, anyone who could possibly give money to your child, make sure it all goes to the special needs trust. It’s very easy to do it, just listing the trust instead of them as individuals.
Annie Allen: [00:50:19] Yeah. And these are the kinds of things that your average family law attorney is not going to think of and why it is so important for them to consult with a special needs attorney as part of your divorce. Because these are the things that, that attorney is going to understand that needs to be addressed. So,
Stephen “Doc” Hunsley: [00:50:33] absolutely.
Annie Allen: [00:50:34] Okay. And then the final point that we were going to talk about today is special education IEPs (Individualized Education Program) and just those types of arrangements that will be unavoidably changing throughout this process.
Stephen “Doc” Hunsley: [00:50:45] Right. So first an IEP that is an individualized education plan. And pretty much every child with special needs in the school system has an individualized plan.
And it is important that both parents are going to be able to have input and make choices on the goals, the placement, the accommodations assignments and their support. And both parents need to be able to work with the teachers and the schools in creating that plan. And so, again, not trying to be on an island, not just giving it all of that to one parent to do, but again, trying to co-parent through that, that’s the
best thing for the child.
The other thing to realize is what if mom and dad are in different school districts? When that’s the case, what you need to do is figure out it depends on the school district, but it may come down to who has the primary custodial rights as far as where that school district lands. But you want to make sure you’re in a school district that’s going to support your child’s needs.
You know, there are school districts that are not the best for special needs, and there are definitely some school districts that are far better than others. So it’s making sure if you have to move and go through that, that you make sure everyone’s on the same page and in a district that’s going to work with the special education work with the IEP.
So that again, your child will continue to get the services that they so desperately need.
Annie Allen: [00:52:04] Yeah, excellent advice. Well, you know, the thing about it is we can only think of so many things at one time and as changes happen after the fact, or we realize things that we didn’t think of previously the reality is that modifications are possible.
The criteria by which is significant or sufficient enough for reexamination is something that your attorney is going t
o have to address with you as the parents in this situation. So just bear in mind that you know, obviously you want to address all of these things and every single thing you possibly can in writing in the parenting plan and in the divorce agreement.
However sometimes things get missed and changes happen that we didn’t foresee. So just know that modifications are possible. And I would have that conversation as early with your attorney to make sure that you understand what protections could be put in place for you for that.
So you know, this has just been such an important conversation. I know it’s going to benefit so many people facing these issues. What final thoughts do you have for us on this?
Stephen “Doc” Hunsley: [00:53:06] Yeah, my final thought would be, remember your kids through this. I know it’s going to be hard on you. But it’s also hard on your kids and just do what’s best for your child.
And remember, you don’t have to do this alone. Find others to help you through this and get the support that you need. If anyone out there is listening and you’ve got a child with special needs, we want to help you. SOAR Special Needs is here to help you. Check us out, we’re soarspecialneeds.org. We’ve got services we can help you through whether you’re in the greater Kansas area or anywhere in the world, we’re able to assist you and, and help you. So reach out for help and do what’s right for your family. And just take a day at a time. You know, one of my key words in life is the word perspective.
And so many times we get wrapped up on all the bad things that are happening in our life. But you know what, ther
e’s a lot of good things going on too. You’ve got some great kids get a lot of things happening instead of getting focused every day on all the bad things happening, let’s start focusing on the good things that are happening, and you’re going to find that you’re going to be able to start making it through some of those bad days.
So it’s just changing your perspective to see all those wonderful things that you’ve been missing out on, because you’re just focusing on the woe is me, how badly. Life is bad for all of us. And I promise you, there’s always someone in worse shape than you, but we have so much to be thankful for, find that and focus on that.
Annie Allen: [00:54:30] Yeah. And I so agree with you and positive thinking is important. And yet at the same time, when you’re at the height of an emotion, it’s really hard to remember that or to execute it well. And so one analogy that I often use with my divorce coaching clients that I think would be very helpful for special needs families to bear in mind is that emotions are like the waves of the ocean.
And if they come on really, really strong, they will go back out. And the only time that we make really significant mistakes is when we make decisions when we’re at the top of that wave. So just ride it out, take the advice of any surfer. (Ha-Ha). You gotta ride the wave. You know, don’t make big
decisions when you’re at the height of an emotion, whether that’s sadness or anger or frustration or overwhelm or whatever the emotion is, don’t make decisions when you’re there.
So thank you very much for being here, Doc. It’s been a pleasure.
Stephen “Doc” Hunsley: [00:55:29] Absolutely. Thank you so much for having me.
Annie Allen: [00:55:31] Yeah, well I wanted to give you a chance to talk more about SOAR and you kind of already have told us a lot about it, but what are some specific types of services that people can get at SOAR?.
Stephen “Doc” Hunsley: [00:55:45] So with SOAR, we offer respite on a monthly basis.
We call it ‘SOARly Needed R&R’. It’s on a weekend, either on Friday night or Saturday. For two hours, we take care of the individual with special needs, as well as the siblings completely free. We rotate through the greater Kansas city area and wherever we have a one-on-one buddy for the individual, we take all ages, all diagnoses, all severities, age range of birth to 72 that we serve.
And I have a full medical team, full behavior team with everything that we do. Every summer we also have a summer camp. Throughout summer, it’s called ‘SOARing For Gold’. It’s eight hours a day for five days. It’s an Olympic theme because it’s the same week as the opening games that are Olympics. We focus on the kids abilities, not the disabilities.
We pull them out of their wheelchairs and send them down these cool water slides, we have a sip of wine. They get t
o go on and just, you know, celebrate them, let them do things they normally don’t get to do. And then also every October we host the Wonderfully Made Special Needs Conference. It’s a national conference that’s hosted here in Kansas city.
And then the following week, it’s a virtual conference. We have right now over 70 speakers from all over the world attending. We’ll have over 400 attendees. Two tracks, one track for families with disabilities and one track for organizations and ministries working with individuals with disabilities. And so we’re right now just finalizing all our speakers, getting ready to open registration, probably at the end of July, 1st of August. With that we have a special website for our conference and wonderfullymadekc.com. But other than that, we also are doing a lot with family advocacy, family support. We’re creating a lot of different things and just have a huge heart for families with special needs and want to do anything we can to help support them. We’re creating employment, creating living situations as well as helping support our families.
Annie Allen: [00:57:43] Awesome. Very cool. Thank you very much for being here and for sharing. I welcome anyone to email me at firstname.lastname@example.org. I would love to make a personal introduct
ion for you to Doc. And if you do happen to find yourself on the soarspecialneeds.org website, or contacting, directly, please tell him that you heard about him on the Starting Over Stronger show.
And thank you again, everyone for tuning in. We’ll see you here again next Wednesday. Again, for more help as you divorce and hope as you are starting over stronger.