True North Disability Planning
Eric Jorgensen is the Founder of True North Disability Planning, the go-to resource for families who have children with intellectual/developmental disabilities and the professionals who serve them. He is the host of the “ABCs of Disability Planning” podcast which introduces listeners to organizations and resources they may have never heard of or weren’t sure how to use. And he is the author of Waypoints – a monthly deep dive into disability planning topics. Correction: When you work and collect SSI they will reduce your benefit by $1 for every $2 you earn, after ignoring the first $85 ($20 all income, $65 earned income).
Edited Transcript
Marsh Naidoo (00:19):
Hello and welcome to the Raising Kellan Podcast. My name is Marsh Naidoo and I blog at www.raisingkellan.org, where we curate resources for parents raising children with disabilities. As always, remember, the content on this podcast is purely informational, and if you seek advice for your specific situation contact a trained professional. As a quick reminder, we have our live in-person event happening on the 26th of August, 2023 in Dyersburg, Tennessee. Day at the Lake is going to be an awesome networking, collaborating event for parents, educators, and service providers for persons with disabilities to come together, learn and grow. There will be a robust speaker list. Speakers will be talking about things such as early intervention transitional planning, IEPs, and 5 0 4 plans. We would sincerely like to thank Dyersburg State Community College as a legacy sponsor. On today's episode, we are going to be joined by Eric Jorgensen of True North Disability Planning.
(01:45):
So grab that cup of coffee, put your feet up, and get ready for some awesome conversation. And today's guest is Eric Jorgensen from True North Disability Planning. This is a robust resource guy, so check out his website. That's True North Disability Planning.com. Eric is a to-go resource for families who have children with intellectual or developmental delays. He also has a podcast called The ABCs of Disability Planning that's available on most of the major podcast platforms. And a really interesting point is his resource is a paid newsletter called WayPoints and it is a monthly deep dive into disability planning topics. Eric, welcome to the Raising Kellan Podcast. Eric, would you mind telling us a little bit about, your background, sir?
Eric Jorgensen (03:09):
Thank you, Marsh. Thank you for inviting me. It's a little bit of a story. You know, it started 11 years ago. I was supposed to retire from the Navy in June of 2012. And in March 2012, my wife got really sick. The abbreviated version is she spent a week in the ICU and I took her off life support and she died on April 4th, 2012. That led to me extending into the Navy to figure things out cuz my son was 12 at the time. He's on the autism spectrum. He has some other challenges and I had no clue what to do. So it, you know, here I am faced with losing my job. I just lost my best friend, my wife, and my son's caregiver cuz she was doing, when, when she died, she was responsible for most of his activities of daily living. You know, as parents of children with disabilities, I think, most people understand what that means and what that looks like, especially, and it's hard finding a babysitter, if you will, for a 12-year-old.
(04:07):
So trying to figure out what am I gonna do. How am I gonna do it, how resources are out there, I just felt like I kept running into walls of well-intentioned, but ultimately useless information. It was always, well, what do you want? Here are some things you could do. So maybe useless is too strong of a word, but I was looking for, Eric, this is what you have to do. Go do this first, then this, and just spell it out for me. Don't make me think, don't ask me to go figure out which one I want. Just tell me what I need to do. And I couldn't find anything like that. I went into financial services thinking pretty naively that a financial advisor gave financial advice. I didn't really know about that, the whole world of insurance sales or investment management, or all the different things that a financial advisor may be asked to do.
(05:01):
And I did. I've worked in some form or fashion within the financial services industry for a long time. And, you know, while I was doing that, I started a business called Special Needs Navigator in 2017 to address what I still felt was a need of giving parents very direct information spelling out for them what they have to do and not being there as much as for case management or holding hands. My mission has always been, to get what you need and leave me alone. Not, not to be rude about it, but you know, I want to empower you and not enable you. So I started that in 2017. Then in 2020, my son had surgery in February where they put a rod in his chest too because he had a concave sternum. So while he was recovering from that, I got my own diagnosis of cancer and they removed the left side of my face.
(06:01):
So if you drew an imaginary line from the bottom of your ear to the bottom of your lip, everything above that, between that and my eye, the bottom of my eye was removed to remove a stage two melanoma. So recovering from that, I had some time to think, as one does, and I decided on financial services just, I didn't wanna be associated in that world anymore. There are a lot of good people doing great work there, but it was more of a distraction to me when what I really wanted to do was 100% focus on helping families and other professionals navigate the major benefits, resources, and services by connecting the dots and just being that solution and that answer to how does all this work together? What should I be doing first? If things like that, that, that I just don't see anybody else doing.
(06:49):
So I incorporated and rebranded from Special Needs Navigator to True North Disability Planning in 2020 because I acknowledge I wanna respect that a lot of people don't like the term special needs, you know? I personally have never said my son has special needs. I will say he has a disability or I'll name his disabilities. So that's how I got to where I am now. And then Waypoint, I just, I, I'm a prolific writer. I enjoy writing. I feel like it's, it's a great way to get information out there. I'm not very good at writing, you know, a hundred or 200-word blogs, so these will typically be 500 to thousand-word essays. I write about topics and that's what Waypoint is. And then my podcast is because I met keep meeting people like you where I'm like, why doesn't anybody else know about this?
(07:43):
And why isn't anybody talking about this? And you think about commercials on TV where there's these pharmacy commercials saying, if you have these symptoms, ask your doctor about dot, dot, dot. Well, parents should have the same thing if, if you have, or if you are dealing with these struggles, ask your case manager or you're, you know, your IEP team about this professional and how they can help you or bring this professional to your case manager in your IEP team and say, I want these individuals involved in my plan. And so that's, that's where ABC's disability planning started. And it's really taking off. I mean, I'm, I'm, I've got so many people I still wanna interview and but that's hopefully in an abridged version of, of what I, you know, where I am, how I got here, what I'm doing.
Marsh Naidoo (08:31):
So you very much have not only an entrepreneurial spirit, Eric, but basically you seen or you saw a need that needed to be fulfilled and you took action towards providing that service for others in a similar, similar context. And so I truly salute you for that. And not only providing a for families who are raising children with disabilities. Is it my understanding that you also provide services to veterans as well?
Eric Jorgensen (09:07):
Somewhat, I work part-time for a hospice unit and I use that to get outta the house because working, you're, you know, I think you understand when you're self-employed and you're just staring at four walls all the time, you can start wanting to get some kind of human interaction. Veterans are another community I identify with. So I started working part-time with a hospice here in Frederick where I do veteran outreach and I honor veterans for their service and their end of life. And it's just another way for me to pay back to another community.
Marsh Naidoo (09:39):
Eric, I'm gonna swing back now to disability planning. And I think we often get caught up in the everyday actions that I needed to raise. Our children will also then move on to transition to support our adults with disabilities. So planning honesty may not be at the forefront of our minds because we are concentrated on the day-to-day test. Can you perhaps tell us some of the ways in which you help families?
Eric Jorgensen (10:17):
Where I come in is if you can kind of imagine a Venn diagram or three C three interlocking circles on the left. You might have estate planning where attorneys are talking about guardianship, special needs, trust, power of attorney, and things of that nature. And on the right, you have the financial advisor who's saying, okay, how much do you need for retirement? What if you have a non, a non-disabled child who wants to go to college? You know, how much do you need to provide for your child when you're gone? All of those things. And there's really no bridge connecting, you know how are, how are we gonna take our financial plan, incorporate it into the estate plan, or vice versa? Well, I can come in, one of the things I'll do is I'll explain, yes, this is why you need to, you know, this is why the financial advisor's asking you how much you need to provide for, because the Medicaid, your state Medicaid waiver won't necessarily pay for the house for your child to live in if you're not using residential facilities.
(11:14):
So you will have to provide an apartment or the house you're in now for them to live in. How are you, how are you gonna pay for that house, be it a mortgage or rent? And take that one step further, who's gonna keep up with the house? Are you gonna have a housekeeper? Are you gonna have somebody to come over and check on the upkeep of the house? You know, are you going to make sure somebody's coming over to make sure that there are no plumbing leaks and no, no damage to the house? Are you gonna have somebody keeping up with the yard if you don't live in a condo or something? You know, will all of those have an associated cost that's not gonna be paid for by the state waiver? And then, oh, by the way, I've been talking about the state Medicaid waiver. Have you applied for that? Do you know what that is? Do you know what services are available to you? Because oftentimes what'll happen is you'll work with a case manager and the case manager say, great, you've got the waiver. Tell me what you want. And that's kind of like getting led to a restaurant blindfolded and saying, tell me what you want off the menu, but we're not telling you what type of restaurant it is or what type of food they serve.
Marsh Naidoo (12:18):
Yeah, that's a, that's a good analogy, right then.
Eric Jorgensen (12:22):
So that's where I come in I try to help families understand at a 30,000-foot level, this is what's available. Where I fall short and where I'm looking for other people to team up with is when those families are saying great, I understand all this, but which provider should I use? I live in Chattanooga. Well, I, I don't know. I'm working at the state level, and federal level, I can't, I just don't have the bandwidth or desire to get down to the state level, county level, or city level to see which organizations would serve your family best. And that's gonna really require, right now, it really requires a lot of effort on the part of families.
Marsh Naidoo (13:05):
So, Eric, I'm currently researching what I need to get set up for Kellan as the ages, right? So there are a few terms that are confusing to me. And, and the first is the difference between SSI and SSDI.
Eric Jorgensen (13:24):
Okay, so bear with me, this is gonna be a little bit of a long explanation and I'm gonna try to keep it as non-technical as possible. So SSI is supplemental security income, and it is a social security benefit that is meant to help people that are poor. You know, basically, destitute and disabled SSI has an income and asset limit requirement. So for assets, you can't have more than $2,000 in your name, $3,000 if you're married. Correction : When you work and collect SSI they will reduce your benefit by $1 for every $2 you earn, after ignoring the first $85 ($20 all income, $65 earned income). So in 2023, the maximum federal benefit is $914. So if you are making more than $999 per month, then you are, you are not going to qualify for SSI because it will reduce your SSI dollar for dollar $85 plus nine 14 is 999.
(14:35):
So it'll reduce it to zero. And then if you have under an income, it could be things from social, you know, another S S D I benefit or a pension child support. If you're, if you're over the age of 18, that will reduce dollar for dollar. So if you're getting $934 under an income because it ignores the first $20, then you won't have any ssi. Social Security disability insurance is a different program, but it does tie in with ssi. So social security disability insurance is typically earned. Is typically an earned benefit. Everybody who works and pays Social Security taxes, not everybody pays FICA, but those of us that do are paying towards earning 40 credits towards Social Security. And you can earn four credits a year. You have to earn 40 to qualify for SSDI, social security disability insurance.
(15:32):
And that will pay based on how much you've, you've paid into the system to, again, typically we'll get to the disabled children in a minute. If you're receiving S S D I, then you have to meet what's called substantial gainful activity. Now, they don't care how much you have in assets, but they do care how much money you're earning. So I think this year it's a little over $1,400 a month. You have to stay below with regard to earnings and there are caveats for what you can do to reduce that income. But that's, that's your threshold. So SSI asset and income limit, SSDI no asset limit, income limit. SSI is a gradual wind down based on the income you're earning or not, or under an income S S D I, it's all or nothing. Either you qualify or you don't.
(16:22):
And then where it ties in with our children with disabilities, if you have a child whose disability occurred before the age of 22, then they may qualify for what's called the Disabled Adult Child benefit. And the disabled adult child benefit means that the child will receive 50% of the parent's social security benefit when the parent files for social security, either social security disability or Social Security retirement. And then when the parent dies, that child's benefit will go to 75%. And you can receive both. Like right now, because I'm widowed and my wife was a stay-at-home mom, my son is receiving both SSDI based on her worker benefit, which was pretty low cuz she was a stay-at-home mom and SSI which is reduced by the amount of S S D I, he's got, you know, because he is getting S S D I, his SSI is reduced dollar for dollar, but he still gets both. 24 months after you start getting S S D I, you automatically qualify for Medicare and you'll be enrolled in Medicare and you'll stay on Medicaid as long as you qualify for the assets, in Tennessee.
(17:34):
Medicaid is called Tenncare and it might be called different things in different, like in Massachusetts called health you know, things like that. So I hope, I know it's technical and I do have a YouTube video about disabled adult child benefit. They can go ex they can check it out. But it's hard to explain. It's very hard to understand Marsh and I hope I did an okay job explaining it.
Marsh Naidoo (17:58):
You absolutely did! And that's why you say it is a maze, it's a maze of the benefits and resources that are available. And in all honesty, it is almost impossible to do this by yourself. And that's why guys, you really need to get out there and get the help because you do wanna make sure that your child is set up. And I think kind of what gets to me, Eric, is that you have to do all this digging around to make sure that as an adult your child has healthcare, which can be totally thrown out of the window if this kid is trying to find a job to work, he's gonna have to try and limit his hours then so that he doesn't lose his healthcare.
Eric Jorgensen (18:46):
Well, it's even worse marsh. Cause it's not just healthcare and, you know, Medicaid waivers. When you get an adult who qualifies for your state Medicaid waiver, that waiver will, will pay for vocational services, which is the employment supports you need job coach, or whatever other accommodations you need to work. It could pay for personal support. So people that need help brushing their teeth, you know, grocery shopping, the other things you do it could pay for community living, helping people get out in the community, become vibrant members of, and have rich meaningful lives. And it could pay for residential like I had alluded to earlier, where maybe they want to stay in residential or they need to stay in a residential facility where they have three or four roommates and the nonprofit that is running that organ. Then the residential facility owns the house, staffing the house. Well, all that is paid for by Medicaid, not the mortgage, but the staffing. So if you lose Medicaid, you lose all those other supports.
Marsh Naidoo (19:48):
That's a lot to it, isn't it? All right, so the neat thing about what you do is, well, Eric, is that you just don't your, the resources that you've put together or your roadmaps is just not individualized to a specific state. It covers all 50 states, correct?
Eric Jorgenson (20:11):
Right. I built them for all 50 states in DC so matter where unfortunately I wanted to do it for the territories, but there's just no support in the territories, so I was only able to do it for the United States.
Marsh Naidoo (20:25):
So going back to your podcast, ABCs of Disability Planning, I want to know more about what you have in store for the podcast and any other information that you could shed light on, on the podcast itself.
Eric Jorgensen (20:42):
I will tell, well, for one thing, you're gonna be coming on it pretty soon. It'll be released probably in June. You know, and I'm, I'm finding so many incredible organizations. I recently interviewed an organization where they do QA software testing and 80% or 90% of their workforce are individuals on the spectrum. And they found a way to make it work. And they've been in business for 14, 15 years. And it started by parents, but, you know, before autism was cool, right? In air quotes, I just had an Israeli company reach out to me about having their co their chief operating officer be interviewed on my podcast. And because they've created accessibility, artificial intelligence. So you know, and it's just like, there's such a broad spectrum of, of individuals I'm getting to meet and then I'll, I'll do more down-to-earth things. Like I did a mini-series on how to prevent abuse, sexual abuse. I did an interview about how to talk to your children about sexuality because whether we like it or not, our children are, you know, they're humans. So it's, it's just, I get to meet some really cool individuals and I get to share them. And like I said you were generous enough to appear in the podcast and I'm excited. I love the conversations I get to have.
Marsh Naidoo (22:08):
You often hear of a special needs trust mm-hmm. <Affirmative>. Now I know that might be in the context of an individual's financial plan as far as the kid is concerned. What are your thoughts about that, a special needs trust? Is it something that could potentially be beneficial for a family or is it something that you really need to seek an advisor for?
Eric Jorgensen (22:38):
So I'm not an attorney. This isn't legal advice. I will tell you, I personally have two special needs trusts. I think they can be a great tool, but I believe you need to make sure you know why you're opening a trust, how you're gonna fund the trust, and who's gonna serve as your trustee. So I'll share what I have in place and why. So people can take it and kinda have a framework for making their own decision. So I have a third-party special needs trust, and it's called a third-party special needs trust because it's funded by someone else's money besides my son's. So, you know, everybody, anybody besides my son who puts money is allowed to put money into this trust, and it's a third-party trust, and I am using that trust for my life insurance, my retirement accounts, probably my house you know, all of those things are gonna go into the trust and be managed by a trustee for the benefit of my son.
(23:43):
You know, it's a supplemental trust. So it's meant to supplement the benefits he'll receive from the state and federal government, SSI, Medicaid waiver, et cetera. And then I have a first-party trust, which I feel very fortunate to need because my son qualifies for 55% of my military pension when I die. And that was a change that happened back in 2016. But he can't receive the pension because it would disqualify him from benefits, but because it would normally go to his, in his name, it has to go to a first-party specialist trust or a self-settled trust. And another example of what might go in that is if you have an adult child and you're paying child support, well that child support can't go to an adult child, you know, over the age of 18, or it'll affect their benefits. It would have to go to a first-party trust. If you have a child who had a medical injury or an accident and gets a lawsuit settlement, that would have to go to a first-party trust. And I'm not gonna go too deep into the differences, but I think there is, there is definitely a need in many cases to have a special needs trust.
Marsh Naidoo (25:00):
Eric are there any resources that you would advise parents to kinda, obviously I would put your podcast at the top of their list, resources for parents to listen to on the go, or anything regarding disability planning.
Eric Jorgensen (25:35):
Disability planning. What does your child need? Right. And I, and it's so easy to fall back on special needs planning as financial planning or estate planning, and I'm trying to break that. I'm trying to shift, just break that paradigm because disability planning and financial planning is a part of it. Estate planning is a part of it, but there are all these other things we have to think about. And, and a lot of times, grandparents, aunts, uncles, they wanna do the, they wanna buy the, you know, the, the gift cards to the stores that the kids really like with the toys or get some clothes. And really what parents might need is some respite. You know, you don't give us any money. Maybe come over, watch our kid for two hours, let's go to dinner, or pay for therapy. You know, I was paying for speech therapy for my son out of pocket because the insurance would only gimme so much. And I would only gimme so much and we felt he needed more or buy a month's worth of medication, you know?
Marsh Naidoo (26:27):
I Love that.
Eric Jorgensen (26:28):
That's the kinda thing, right? I would like to see more of it. There are three podcasts I really love. Two of them are disability-related, and one is not. So the first podcast is Loma, L o m a h, and I'll, you know, I'll send you links to these Marsh. Kim Albright is a mom, and what she's doing is she's chronicling her journey as she plans for her daughter. So there's gonna be, and she does her seasons based on what she has questions about. So she does the entire season on financial planning, an entire season on communication and learning and reading and, you know, I really like her content. And the other one I like is Annette Hines. She is another special needs mom. She lost her daughter 10 years ago and her podcast is called The Parenting Impossible, the Special Needs Survival Podcast (I think is is the full title) But I'll send you a link to that one. And then the one I really like that has nothing to do with special needs, but really everything to do about mindset is afford anything with Paula Pant. And it's just how you can't afford to do everything you want to do and frameworks around making decisions and priorities and you know, things like that. So, I will send you those links to some of my go-to podcasts.
Marsh Naidoo (27:55):
It's just to kind of get parents and professionals out there thinking about something that you often don't wanna think about. Thank you so much for your time.
Eric Jorgensen (28:08):
You're welcome, marsh. Thank you again.
Marsh Naidoo (28:09):
Again, thank you for listening along on the podcast today. Thank you to Dyersburg State Community College for being a legacy sponsor for our Day At The Lake event. Coming up this August 26th, tickets are priced at $15 per person and is available for purchase on Eventbrite. There is a link as well available on our website www.raisingkellan.org. If you would like to receive more information about the events, you can email us at raisingkellan@gmail.com and follow along on our Facebook and Instagram page at Raising Kellan. So without further ado we'd like to wish you guys a great week ahead. Happy 4th of July to our friends in the US and as always, remember, get to the top of your mountain. This is Marsh Naidoo signing off.
