Ask An Autism Mom EP. 57

Special Needs Trust

Flexible seating is only as good as the teacher can implement it.

It can be used with normal students and those who are considered neuro-typical. It can be used with students that have autism. It can be used with students that just bounce their legs. I bounce, I move in my classroom. My students know me for pacing the room. I don't stop moving, but I can't expect that my students are not going to stop moving either if I can't stand still.

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Episode Highlights:

Today we're talking with Victoria Erwin. She has been in the field of education for nearly 12 years and has taught anywhere from sixth to 12th grade in varying years throughout the years. She has noticed arise with the different attention issues and cognitive issues within the classroom. This has sparked an interest in trying to figure out how to help these students through flexible seating.


Jenn Eggert: Hi everyone and welcome back to ask an autism mom by Lakikid. I'm Jenn Eggert of ask an autism mom and you can join me every Monday, live on Facebook to learn tips, share your insight and meet other parents on today's show. We're back with Kori who is a stay at home mom to three, two of which have special needs and she's a blogger.Today we're going to touch on something that we talked about when we did the Guardian show. We're actually going to get more in depth with special needs trust. I feel we need to set up for our children's future now because many of our children will not be able to think that way to set themselves up. So we need to make sure that they're set up and the sooner we do it the better. So for those of you watching live on Facebook or listening to the podcast on iTunes or youtube, if you want to get alerts to ask questions live or watch us live, type "5", the number five in the comments section.

Jenn Eggert: Now, And also remember we thrive on your likes, your shares, you're tagging your friends. If you know someone who could use this information, please share now and I'm going to tell you this is not just information for parents of teenagers, special needs trust are good for any age child, including newly diagnosed, fresh little two year olds. So I want to welcome all of you. Let's see, we have Melinda. Good morning Constance. Welcome to your first time. I'm so excited. This is a great one to watch because like I said, every parent needs to understand what a special needs trust is and how it works. Melissa, welcome. I know MarieEllen's all excited about this one because of the topic points. So Angel. Good Morning Jessica. Thank you for sharing again, every like every share, every comment, every tag means the world to us. So if you're just joining us, you're listening to ask an autism mom and we're sitting down with Kori today who is a blogger and special needs mom of two, mom of three children though we are going to be discussing more about what a special needs trust is.

Jenn Eggert: I can't wait to dig into this topic with you, but first I want to give a huge shout out to our sponsor. As you all know, our sponsor is and we have our new product which is about to come out on Kickstarter very soon. Our new write and chill as a revolutionary new weighted lap pad. It allows you to have the benefit of a weighted lap pad that you can write and draw on with a water pen. It weighs 2.8 pounds and is filled with glass beads that are individually bagged in each compartment for safety reasons.

Jenn Eggert: I don't know if you could see that. I've used it for Riley and find it amazing. I brought, actually brought it to a robotics competition and she was able to sit down with her cousin and engage him and her in this activity for a number of a great amount of time and it really helped her anxiety. Robotics competitions if you've ever been to one, they are loud, they are busy, especially this was a semifinal. So there was probably 65 teams and then you have the families of the teams. So it was great for a big loud auditorium event.

Jenn Eggert: So I want to thank you all for watching. Jason, I will get into your question in a few minutes. Melissa, I know Melissa is the one who thrives every week on, Ooh, what's the topic I'm so excited. She loves every topic we do and is wonderful. Wonderful. And I agree. If you know a dad who would be interested in their information joining our group, we have a few dads in our group. Jason really wants to start reaching more fathers. So if you know a father who wants more information, please join. Jason, welcome. You should hook up with our Jason Shieh, who is the founder of lakikid because like I said, he really wants to involve more dads in this. So today, like I said, I'm talking to Kori who's from Albany, New York. She's a mom, a blogger, and the owner of Kori. At home and autism parenting blog for parents of autistic children.

Jenn Eggert: As a child, she was strong willed, highly sensitive, empathetic, curious, imaginative in a bit of a daydreamer as an adult. She a caregiver and nurturer, the realist who lives next door though not always literally and to teachers though not by degree and researcher. She wanted to be an advocate for those. Most in need, a mentor for those looking to find their voice and build a community that's accepting for all. She's a work at home mom looking to build up her online business empire with three children of her own too with special needs. She draws from personal experience and past work experience as a former assistant pre k teacher. Now let's jump into a special needs trust. This is huge and I just saw, Wilma who is looking into getting a trust this week. So Wilma, I'm excited. At the end, if you have any questions, please ask them first. Kori, what exactly is a special needs trust

Kori Tomelden: Well there are two types of special needs trusts. There's either a general support trust and a supplemental care special needs trust. And majority of special needs trust that get created are supplemental care. But you should be looking into both types. The supplemental care are, it's pretty much what it sounds like. So it's your secondary source of benefits after things like SSI or an able account if your child has one of those. And the specialties, the purpose for the special needs trust is to serve as a source of money and other benefits for your child after all other sources have been exhausted. So that was B again, like the SSI or SSID or I'm able,

Jenn Eggert: So what would be the benefit of me getting a special needs trust for my child?

Kori Tomelden: Oh, well right now the benefit of getting a special needs trust is to ease that financial planning piece and to ease a big part of your future. We touched on it in the guardianship episode. A nd it's one of my biggest fears is really not knowing what's going to happen to my child in the future because I can plan for these things and I can prepare for these things. But if I'm not physically there, I dunno what's going to happen to her. So the special needs trust for our family was just another way to establish that layer of support for her and to kind of just ease some of my own anxiety about the future for her.

Jenn Eggert: Now who is it a special needs trust Best for like who should set up a special needs trust

Kori Tomelden: Anyone. If you have a child with a special needs look into setting up the trust. It does not matter what your financial situation. If you think that you can't afford something like this, just start setting aside a little bit every day. Or you know, if you have other family members who might be able to contribute, ask her other family members. It could be an alternative to a birthday present for that matter because then I'm just speaking from experience with my own daughter. She's, we stopped buying like a lot of new stuff for her, for her birthday and for Christmas, unless he was close. And when we had family members who ask him, what can we give her, what can get It's like, well you can get her iTunes card and get her gift cards for something, but we don't really have any expenses for her right now aside from clothing and groceries. But if you really want to help her, you know, she has this able account that you can contribute to or you can contribute to her savings account. And her savings account money is being used for the special needs trust.

Jenn Eggert: Now, Melinda, this is going to play into your question. When should I set it up What age should I essentially start working on it

Kori Tomelden: Yes. Any age. It's never too late. It's never too early really to set up a special needs trust. She has to know that it can be an involved process just because there's a lot of legal terms of billing to it. But it's never too late. It's never too early.

Jenn Eggert: So Melinda, I know your guy is young school age, but I recommend it now when I know Kori would agree because the more time you spend, the earlier you start working on it, the more they'll have in the long run opposed to you started when your child is 17 and looking at aging out.

Jenn Eggert: You'll have more time to prepare, more time to get it set up and they'll hopefully in essence have more money in it so that they are better off in the future.

Jenn Eggert: Now, Kori , if I do this, do I need a lawyer?

Kori Tomelden: I would highly recommend it. It's not necessary to have a lawyer, but I would highly recommend at least consulting with a lawyer and main reason being, because again, there's just a lot of legal needs that goes on with it. And with a lawyer, they at least have, you know, they're more familiar with the process because this is something that they would likely be doing, on a more everyday basis. So I would highly recommend consulting with a lawyer.

Jenn Eggert:Now, I just want to go back real quick. Angel, you couldn't hear what age we said as young as possible because that will give you more time to build this money and create a stronger, more solid trust for your child. Now I have one more question and then I will jump to your question, Melissa, because I do think that's important to ask my next question, Kori, is there's a lot of different that they throw out at you in life and what kind of terms should I know and what do they mean?

Kori Tomelden: With a special needs trust, it's a legal arrangements so it's set up for the benefit of your child, but it is not owned by your child, so it does not get counted as income, which is huge for kids who are already receiving SSI or will be receiving SSI because when it starts counting as income, you can only make so much in order to receive SSI benefit. That's so with this special needs trust in place, you have that extra layer of financial support. And then, so the purpose for the special needs trust, it's a third party. It's a supplemental thing. And the primary objectives of it are to protect the assets, provide additional income, prevent the loss of government benefits. Again, that's like the SSI and you know, when your child is an adult, they might be receiving things depending on if they're working or not. They could be receiving things like the snap or food stamps. The low income housing assistance and things like that. And with a special needs trust in place, you can still save money for them without jeopardizing your financial benefits. And then you might be able to use some of the money towards paying things, paying for things like therapy or home modifications.

Jenn Eggert: Now our own Jason has a very important question that hopefully, you know, the answer to his question is how does special needs trust work with wells He's looking into a will and a special needs trust and he's not sure how they would work.

Kori Tomelden: Okay. to do that you would need to appoint the child as you need to make your estate.

Kori Tomelden: And so you're a state becomes included in the special needs trust. This is why I say consult with a lawyer. Or with a financial advisor who knows the process better, but your estate essentially in your will becomes part of the special needs trust. So it's all about including that kind of.

Jenn Eggert: So in essence, my estate can go to my child, I just have to have it noted in the will to go straight from the proceeds of the estate, go to the.

Kori Tomelden:Yes. You want it to go to the trust, not necessarily to your child direct, right. Because the trust is being set up to benefit your child. And again, if it goes directly to your child then it could be counted as income and that income then counts against whatever government benefits that your child could be receiving. So the special needs trust is just that extra way too. And it also makes sure, so protects it against the taxes. It protects it against being counted for SSI. And then absolutely ensures that the money that you are setting aside from your child is being used for your child's future.

Jenn Eggert: And I want to add, I've seen in our group recently and other groups, people saying that as their children are hitting teenagers, they're finding that they're going online and using mom's credit card to order things. So our kids don't have that impulse control, let's admit it. So by turning the state into the trust, you are taking away all of that money for them to possibly spend on things that don't make sense. Right. As you could see, Kori a busy mom. She has one with her today. But that is why we do what we do folks, because we are empowering parents to be able to take care of their children while getting the knowledge they need.

Jenn Eggert: So let me just scroll through these questions. Wilma if you are not in our Facebook group, I suggest that you join. It is I know Jason or Miguel, we'll put it in the comment section for me. So please join our group. Kori is in our group and we can kind of help you set up a trust. If you're already thinking of it. Let's get the setup now so that it can start benefiting your daughter right away.

Jenn Eggert: Hi, Tanya. Angela, of course. Hello Shannon. Welcome from Las Vegas. Sheila Ritter, I was wondering when you were going to watch my friend Sheila and I have been friends for about four and a half years since around diagnosis, so that's pretty cool. Melinda, I hope your question on the age is answered. Like I said, I know the age of your son and I know his needs and I suggest you guys talking about it very soon, but in a special needs trust, I also suggest you look at a will because you don't want to take care of just one aspect. You want to make sure that their caregivers are picked out and who has access to this special needs trust. You don't want to give uncle ted the trust who has a gambling addiction.

Jenn Eggert: You want to make sure that you set it up properly. Now, Melissa, I hope you're in your question was answered on SSI payments. A gain, Kori said it does not affect SSI. Unlike if you were to put the money into a savings account, which would Angel, she said that it can be started at any age. We recommend the earlier the better. That way you have a more solid, strong trust to take care of your child. God forbid something happened to you. It's there already. Many of us think we don't need it until our kids are older. But for anyone going through health problems and chronic illness, it's something to think about now because lifespan maybe shortened on your end. So you need to really think about what your child will need when you're gone. Jason, I have more ideas for you about just the trust lawyer that we will talk about, but I agree. I have some contacts with some special needs trust lawyers in South Carolina. I will try and get them on the show to do more. Conversation. Wilma, again, join us in group because we will work on specifically what you need because I see that you're willing to trust is what you are working on and my insurance is already in place and that's perfect.

Jenn Eggert: Melinda, I agree. Many of us don't want to think about things like special needs trusts because it means thinking about the future of our child and if they'll still need to depend on us but it also means thinking about our own future and what it has to bring and many of us don't want to have to think about someday I'm not going to be there because for a special needs parent and I know Kori I have had this discussion and we both tear up during it. Thinking about our child being alone without us is detrimental

Jenn Eggert: But it is something that we need to admit. It is something that we need to face. It is our biggest fear but we can't let that fear cripple us. Kori and I talked about guardianship and she was as she's tearing up now, she was tearing up because the thought of appointing someone to take care of her child in the event she can't. It's hard and I know for all of you are going to be a lot of emotions. There are going to be a lot of feelings. Please join our group. Kori and I are facing these feelings as we speak. We would love to support you and share with you. And like Kori said, and this is something that Kori and I are discussing, I want to do a show on, we don't talk enough about mental health for parents. Many parents suffer from PTSD after an autism diagnosis. So we really want to support you through this, setting up a trust, setting up guardianship and taking care of your child's longterm needs because we know it's painful and we know you should not go through that pain alone. We don't want anyone to feel alone through that pain because it is horrible. Now Rosley has the question, Kori, is their initial, is there an initial amount to open a trust?

Kori Tomelden: I do not believe so. But that would be a better question for either, not necessarily for a special needs trust lawyer, but for a financial adviser. You could go talk to a bank, to your, go to your local bank and see if they have someone who's familiar with setting up the trust and just ask them some questions and you, it's not something that you have to make this commitment to right away. But just to get your Jennifer.

Jenn Eggert: I agree now. Rosley exactly. We are facing our biggest fears in trust and in guardianship, but it is something that is highly needed to protect our children. Our main goal right now is to protect our children. Why would that change when we're gone So, and like you say, Rosley better to plan now and have a stranger planning for our child. I think, I don't know about Kori, but I know for me, having a stranger planning for my child is my biggest fear. I have seen it happen. As most of you know, my sister was special needs and I have seen it happen to some of her friends that they had court appointed strangers who took care of their needs and guests they were provided for. But it was the basics where my father had set up everything so that my sister was well taken care of and she had not just the basic, she had a really amazing life. She did things. She, yes, my parents are both still alive, but my parents planned for her future.

Jenn Eggert: And as sad as it sounds, my sister had severe disability which took her life early and they faced their biggest fear in planning a funeral when she was 12. They started talking about planning for her funeral. Now they were told she would live one year, she wouldn't live to see a year. We had 34. And we're thankful for every moment. So planning in advance makes it easier. When my sister did die, my father handed this folder and it was taken care of. So the stress came off of him and he could at that moment breathe. So if you have a trust and guardianship and something happens you can kind of like say something happened to your spouse, you can kind of breathe because you know, you have a plan in place, you're going to be okay. Now, I'm going to go through Wilma should I go through the bank a lawyer or both?

Kori Tomelden: I would advise both. Because it is a special needs trust is a legal thing. So it does need to have that official, like a contract. It's a contract in place. The actual account, here's where the confusion I think comes in the special needs trust is the collection of the assets. So it could be the living will, it could be property that you own. It could be anything. Or like if you have that like a 401k that rolls into the trust. So that's what the trust is. The trust itself is not an actual like bank account. But you could talk to a bank about setting up a dedicated trust fund that then to the overall special needs trust, which is why I recommend both the lawyer and talking to a financial advisor because they can help you figure out exactly which one you're going to be starting with. But that's the most important thing to remember, which, I'm sorry I did not touch on that before. But the special needs trust itself is not a singular thing. It's a collection of things. How do I say, like, and if you have an insurance plan and let's say that covers the vision and medical or like bitch division care, dental care, and then like help medical health care, the special needs trust is like that insurance plan. So it covers all different things. It's just under one bigger umbrella. That's the best way I can probably.

Jenn Eggert: Right. So having a team in place also ensures that it's taken care of properly and all aspects are met because it's special needs trust is like our children. It's a puzzle that you need to be fitted together and have all the pieces in one place. I just got to say, hi mom. Sorry. My mom loves to try and watch when she can because she doesn't see me very often. Now Angel says, I'd love to get help with those because my mom does almost died almost two years ago at the age of 43 and I'm 29 and I talk about it all the time. We struggle every day financially and I want him to have something when I'm gone, so he doesn't need to live this way. Angel, I'm not sure if you're in our group. I'm trying to think and I think you are, but please join our Facebook support group and we can maybe find ways of finding even a little bit of money. Kori do agree that even $10 a month is something, especially with a, you're 29 so obviously your child is younger.

Kori Tomelden: Oh, absolutely. Anything that you can possibly set aside is just going to make a huge difference. So anything, no amount is too small, just like it's never too late or too early. No amount is too small to start for a special needs trust.

Jenn Eggert: Now, one thing I want to say is it can be as simple as say you get coffee out twice a week. It could be as simple as drinking your coffee at home, using that money, putting that aside and every month throwing it in this special needs Trust. It Angela can be that easy. So if you're that stressed over the financial situation, we can help you look at ways of taking things and making them work. Jessica, our support group is ask an autism parent, Jason or Miguel, can you please put the link in the comments section for me but it, we will link you to it, but you can also link to it by going to and that will bring you and hopefully one of my team members will put the link in the live comments for you so that you can actually click the link.

Jenn Eggert: There we go. Jason got it for you, Jessica. You can join the group. And then we will go from there. Now if there's no more questions, it is 1:30 and that means we're coming to the end of the show. Like I said, please join us in our support group. The link is in the comment section. Kori is in there. I am in there many times each day looking at things. We will help you. I will help you look at even if you want me to help you look at your budget each month and see where you can move from your budget because my husband and I have recently had to do that. We've had to unfortunately due to our situations had to rearrange our entire budget recently and there's always somewhere you can find something

Jenn Eggert: So I will work on that with you if you need. Now for those of you asking about a special needs trust lawyers, I actually have a few that I have made contact with in the past. I will reach out to them again because like Kori said, it would be really great to hear from a lawyer to get more information and that way we can get you the legal side where Kori and I are coming from being moms who want to make sure our babies are always protected and taken care of. So Melinda wants to save very informative talk today and she loved it. Well, thank you Kori for joining us. I really enjoyed it and Kori, I want to say thank you for being real with us. Kori and I cried together on our show because remember folks, this is emotional. This is difficult and this is not something you have to do alone.

Jenn Eggert: You have a whole community. I call people my tribe. You have a whole tribe of people in our support group that are there for you, that will love you, support you, and help you get through this. Dealing with these issues are ones that you don't want to talk about. Let's make it talked about. Let's quit hiding behind fear and shame. Let's talk. So thank you everyone for joining us today. I'm Jenn Eggert and you can join me at 1:00 PM eastern every Monday for more parenting tips. And remember, you can always join our parent's support group, at Thank you all for coming and remember, until next time, every child brings good luck.

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