Planning Financially for Special Needs Children

Jun 14, 2024 | Podcast

About This Episode

Podcast host Adam Dayan, NYC Special Education Attorney, sits down with Bruce Maier, Financial Advisor and Managing Partner of Iron Birch Advisors to demystify the process of planning financially for a child with special needs. Throughout this episode, they explore ways in which parents can ensure long-term financial stability for their disabled child after they are gone by establishing a Special Needs Trust.

They speak about the legal tools needed for estate planning to better protect a disabled child from being disqualified from receiving future assistance from government programs after being designated a beneficiary of assets. They also cover some common mistakes caretakers of dependents with special needs should be sure to avoid.

(LISTEN) The Curious Incident Podcast Ep. 20 – Planning Financially for Special Needs Children

Transcript Below

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Do you have questions about your child’s education? Call Special Education Attorney Adam Dayan at the Law Offices of Adam Dayan: (646) 866-7157 and request a consultation with our New York attorneys today.

Transcript: Planning Financially for Special Needs Children

Announcer: This is Curious Incident, a podcast for special needs families, and your window into the world of special education. Special needs parenting can be challenging, and we want to make it easier by providing you with the resources you need to help your child.

Step deep into the world of learning differently with your host, special education attorney, Adam Dayan. Adam Dayan: I am excited to present my next guest on this podcast, Bruce Maier. Bruce is joining us to talk about planning financially for special needs children. Bruce is managing partner and financial advisor at Honor and Birch Advisors, which is a private wealth advisory practice of AmeriPRISE financial services. Bruce is a financial consultant with over 30 years of wealth management and financial planning experience. His practice focus is working with families that require special needs planning. Bruce, thank you so much for joining me here today.

Bruce Maier: Thank you Adam, pleasure to be here. Adam Dayan: For many parents, visualizing how their dependent child with a disability will live after they are gone is a very difficult thing to do. What are the first things you want parents to know about the special needs financial planning process?

Bruce Maier: Adam, I think I want to first address my definition of special needs. I think it’s the crux of planning. My definition that I ask every client is, is there someone in your family that may not be financially independent? I’m going to repeat that again. Is there someone in your family that may not be financially independent? So many times we view special needs and we associate it with autism. But based on the question that I have just posed, it really opens up to a wide range of community with people with physical or mental deficiencies. Let me give you one example. I had a client whose son was bipolar. She said to me, quite frankly, when my son takes his medication, he’s fine and financially independent. And he doesn’t take his medication, he’s not financially independent and I can’t control that. So in reality, she said, I would never have viewed my son as special needs. But all of the planning is the same. So posing this question to families early on is really sets the tone and have I then start planning. I mean, we are looking at individuals’ plan for the worst, hope for the best. Most importantly, do not think anything is irrevocable. And the key is where parents are in planning, we’re planning for two generations. And the other objective, it’s flexible and what you do and what I do, our objective is for Johnny to mainstream, Johnny to get married, Johnny to go to college. But just in case what if not. And I think both of us have these backstops that we can really put into place when we get that opportunity to talk to clients. But most importantly, when we get them to answer that question and get that reality, check that, yes, I do need to plan.

Adam Dayan: Absolutely, it’s very true. And it’s a helpful definition to keep in mind. We sometimes think about special needs more narrowly than is the case. And it’s good to keep a full picture of who this potentially applies to.

Bruce Maier: Throughout this, I’ve been referring to Johnny and sometimes it’s my go-to and I don’t want a misunderstanding of Johnny. Only being that individual that may not be financially independent. It may be that sibling that you have. It may be even a, as you said, a brother or sister, a parent.

Adam Dayan: What are the legal instruments needed for planning financially, Bruce?

Bruce Maier: So I will tell you the key, the absolute key is to have a will. If there’s a typical family and if the individual of parents die without a will, it’s not easy. But there’s a workaround and it can work, let’s say. If there is a situation where there’s a special needs child or sibling or brother or sister or aunt, uncle, and there is no will, Adam, it’s catastrophic and it has to be addressed. So that’s the very first part. I have this one question that I do at seminars and I said, I’m going to ask a question that’s probably the only question that has a unanimous response and people are looking and saying, what could that question be? And then the one question that I pose, can anyone, anyone predict that they will be here tomorrow? Honestly, it’s the only unanimous answer to a question. Be that said, we need to do a will and we need to do a will sooner than later. So that’s the key of really starting. Secondly, a financial planning is to make sure that the individual does not have any assets in their name over $2,000.

So all of the legal instruments that you work on or that we present to families to reach out to you to do is the crux of financial planning, Adam, is to make sure that our special needs individual never, ever get disqualified from any federal or state aid that’s available to them. Whether they need it or not doesn’t matter. It has to be available to them. And honestly, we as parents, when we’re not there, we’re not going to have that choice. So we must make that transition easier for loved ones around. So the key is to structure these types of legal instruments that make sure the individual does not have assets in their name. And we can go into detail further on during this on how you get into the right types of vehicles. But the key is it’s a $2,000 limit that an individual cannot have as assets on their name.

That’s crazy. It’s an amount that everybody is shaking their heads and hopefully change will be, but still in all that amount stays. So when we have families coming to us and say, what is the next step? We provide certain things called trusts. We can go into detail afterwards, but that’s the part of the legal of setting up these trusts that it is not directly in Johnny’s name, but the trust is there to supplement for Johnny’s needs ongoing.

Adam Dayan: I think the point you just made is one that’s going to be emphasized repeatedly throughout this episode that special needs children are entitled to government benefits. And the purpose of this planning is to make sure that they can continue receiving those benefits and also have money set aside for their financial future without jeopardizing those benefits. So very important point that we’re going to be coming back to you mentioned trusts. Why don’t you talk a little bit more about what is a special needs trust?

Bruce Maier: Absolutely. And to go back, it is the crux of planning and especially its trust. And many times it will be called a supplementary and many times families are there are words in their terms that are in the financial profession or the legal profession that sometimes are overwhelming. And then when we simplify these terms to really what they mean, crystallizes for families to say, oh, this is really what it means. And here’s where I’m going to bring one of a special needs trusts most of the time they’re called supplementary needs trust. So initially people go, I don’t understand what supplementary needs trust and they’re off. Let’s look at it.

Supplement the trust is there for funds to be in to supplement Johnny’s life, not to support. We have done everything for government regulations and federal because we don’t have more than $2,000 of assets in their names where the government will support that is food, clothing, shelter, different types of programs. These are all given by the government if the individual does not have more than $2,000 in assets, all federal requirements. So now doesn’t the word supplement come into a little bit more play.

The funds in the supplementary needs trust will be there to supplement Johnny’s life. What are they add a computer, maybe additional health care disability based on my definition of may or may not be financially independent. I didn’t say dependent. I said independent. That’s key. And that’s what most parents have to realize. Disabilities run the range. So maybe that supplement is to provide a mortgage in an individual’s home. Maybe that individual is not totally independent. So this is to supplement and if legally prepared correctly, all of the other government programs available are still there. So we have the best of both worlds in that.

Adam Dayan:

Bruce, can you provide an overview of the different types of government assistance?

Bruce Maier:

I’m glad you asked that question. There are two types of government assistance and it’s measured on something called means tested and non means tested. And let’s go a little into detail. Again, simplifying this word. It’s not overwhelming for parents. And what it is is means tested is really looking at the assets of the individual themselves. And this is where the $2,000 limit comes in. It is a means tested. It is the government tests the means of the individual. And if they have more than $2,000 of assets, they become disqualified. And this is ongoing. So even if they were in a program, these are yearly tests. Or even monthly tests that the government will do different types of audits to see that these assets haven’t gone over and above. So I don’t want parents to think, OK, my child doesn’t have $2,000 of assets now. Applies never gets disqualified. Everything’s great. No. And this is again the key of the planning. We never can see that assets increase over and above $2,000. What happens then?

Two things. Government can say no more programs. We’re done. You become disqualified. Or, and when you get down to that level, then you get back in the program. But that means you go back of the line. Anyone that has a special needs situation probably will be shaking their heads. You never ever want to go to the back of the line again. So the key of our planning is really never to get to the back of the line. And these are the things that we do financially. You do legally to structure. So that encompasses the trust that this has a funnel for dollars to go in.

What happens if something comes and Johnny gets added money? Where can this go? It can go into trust. It can go different accounts where the government will not, these are protected assets where the government will not include them in their means tested.

Well, let me go into, I think it’s a good transition now to just go into a little detail of when means tested comes into play. And this is really when an individual becomes 20 to 21. There’s something called ages out. And that’s when the government says, okay, this individual, we’re going to use the means tested before that was all educational. In this country, education is provided to anyone no matter what, up until the age of 20 – 21 in the world of disabled individuals. After that, you age out. When you age out, you’re not entitled to any of the educational types of programs available. That’s not to say that you’re not going to be eligible for other programs based on that individual’s age. Job training, job transition, different types of interviewing skills, group home, a change of life at that point. But let’s just go through that. I think it’s a good point to just go through stages because I’m sure there are people that are every different stage of their life and that’s why planning is so important.

Adam Dayan: I just want to say that the period you’re talking about is often referred to colloquially as the cliff because they go through this long period of having education supports in place. And then they approach the age of 21 and they reach the end of their eligibility and then they enter a new phase of having to cobble together services and benefits and start to think about funding. And so I think this is a hugely important phase that you’re talking about. And I just wanted to emphasize that.

Bruce Maier: Absolutely, and it’s key and it’s really tied into age 21. I mean, there are some war stories that you see that there are kids that are literally taken off of the school bus the day they turn 21. It’s horrible and we know we can’t control that. But at least we can become aware of it and plan. And when, if we haven’t done the proper planning after that and that individual agees out, what happens?

The individual goes back home. The individual’s complete social situation has changed. They’re no longer in school. They’re sitting at home. They’re upstairs working on their game boys or computer. The whole family, Adam, the whole family dynamics change. No longer can two people work. There has to be somebody at home. The entire social system breaks down. Everything you’ve worked for and advocated for 21 years stops.

But if you have this transitional planning, if you have done it properly, the turn key of the availability of programs that are available, different types of transition programming that you work to on the educational side and all of that transitional planning that an individual is ready to go when they become 21, all of the plans are available because Johnny doesn’t have more than $2,000 of assets in their name. Do I wait to plan until then? No. I’ll just go back to my initial question. What happens when the child is four and five? We have to plan for two generations going forward.


If you like what you are hearing, please let us know by subscribing to the Curious Incident Podcast and letting other special needs parents know about it too. If you have thoughts, questions, comments, or would like to suggest ideas for a future episode, we’d love to hear it. So email your feedback to podcast at

Bruce Maier:

Let’s just spend a moment on if I can on the phases of the individual because I’m sure there are different listeners at every different approach. Yes. Ages one to three. You’re seeing your child may not be developing as quickly as you think it may be. 50% of that is anxiety, but the other 50% you may be reading something. So during that period is a time of evaluation. And I stressed every parent if they think that there is something not right, don’t procrastinate. Get your child evaluated. Go to your pediatricians. Go to early childhood therapists because all of that documentation and everything that you will have will enable you to then enter the other phases because it all goes in order. And these programs may be available. If you haven’t had your child evaluated and you reach four and five years and all of a sudden now you want that speech therapy, that may not be government assisted because we didn’t evaluate it earlier. So take that early.

It’s tough for parents. We’re trying to say, okay, we don’t want that there might be a problem, but the earlier the evaluation statistics show, the more success that our children will mainstream. My child is a special ed teacher in early intervention. Her kids at three and four and five, they come in on verbal, they walk out verbal. But all of those children have been evaluated before because they’ve been allowed to go into the programs in the special school that she’s teaching. And the special school that’s costing $95,000 a year, I don’t put that down, but the government is funding that because it’s done properly. So one to three, sometimes you have something called an FEP, a family evaluation plan.

Three on through the educational side. Three to let’s say 20 is schooling, something called an IEP, an individual evaluation plan. And this is reviewed every year. But again, as I said, the federal government all has to provide an education most of the time they’re in public schools. However, if the IEP, which is a group of people that get together for this report, it’s the parents, it’s psychologists, it’s pediatricians, it’s other teaching, it’s all of those that say what your child can do and what they can’t and what training or what programs they need available to them. If that respective public school cannot provide that, and here is where your expertise Adam comes into play and here is where parents should early, early on come to you on that side. That public school may not be able to provide that. Is that transition easy? May they need an attorney to be with them to claim that that’s true? But if that is ruled for the parent, then the child’s able to go to a special needs school, very similar to where my daughter teaches, that have tuitions of $95,000 and more that are 12 month a year schools that really address that. And at that point that transition in that IEP is evaluated every year, attorneys are working with that. We’re being involved in the financial planning of that also and our financial planning is more educational, we want to be a resource to them.

So we go through this, we work with the parents, we’re not in a vacuum on that. In between that we reach guardianship. So guardianship is 18 and then it all depends on the severity of the disability. My child may not be financially independent, but they’re able to function. Well my child definitely is not financially independent and can’t function. We have to go through permanent guardianship. You can’t wait until 18 to do this. This is like a two year process. So I reach out to every client. When your child is reaching 15 years of age 16, we have to start the guardianship role. Too many times Adam parents think guardianship is a one way street. There are different types of guardianship. There’s a financial guardianship as a social. It’s not just all cut and dry. But you have to go through this guardianship and it is very hard for parents to go through this because what comes in, it is my view is it’s like re-adopting your child. They will come in and I talk to parents right before that and I said this is what it’s going to be. Be prepared. And so many parents come back and say thank goodness you at least prepared me because when that person came in, they’re doing their job Adam, they’re correct.

But they’re going to know, where does the child sleep and how does he do? And all of that. And the parents will say I took care of my child for 16 years. How dare you come with that? But it’s their job. It’s the understanding and most parents come back and say you relaxed me. You took this anxiety away. I understood and I was able to ask and I didn’t get my backup. And again, you’re working guardianship too and that’s you’re probably doing that saying. So that’s the transition to that.

And then we hit age 20 – 21, which is the aging out and now that means test it comes in. As the child, no longer does the parent who has a million dollars or two million doesn’t matter. They’re not looking at your assets. They’re looking at the individual assets, not being over $2,000 means tested. Two different types of governance programs means tested where you are measuring your assets comes under Medicaid and SSI. Medicaid is related to health. SSI is really where parents can collect additional stipends or amounts based on their taking care of their children. Non means tested and by that now the word definition is now everybody will understand non means tested that 2000 is not going to come into play. That’s going to be Medicare, which we understand.

Medicare is not based on income. And something called SSDI, which is Social Security for disabled individuals. Similar to SSI, each individual is treated separately. Every case is different, but those are the programs. Section 8 housing is also means tested, but that makes sense. If you apply for section 8 housing, you’re going to have certain assets that you have to not have to be eligible, hence means tested. So hopefully those words are now becoming a little bit more clarifying.

Adam Dayan:

Bruce, how does a special needs trust get set up?

Bruce Maier: So this is when people turn to Adam. Seriously, a special needs trust gets set up to going to an attorney that has the expertise. And we work together. It’s a team how to fund the vehicle and how to go, the financial aspect. But the most important where parents shy away from is the cost. They’re always concerned about the cost of a special needs trust. Now setting up a special needs trust really has to be done by an attorney that has the expertise. And sadly to say if you have a good relationship with an attorney or it’s been a family friend going through and they don’t have special needs expertise, you have to make the step and say, listen, I cannot use you or I need to get other people involved in this process.

So please look for somebody that has special needs expertise or if they have elder care. You know, they have elder care. There’s some. And as you go through and you’re looking at that, do your own homework. But look at attorneys that have that in their list of specialties. They got to have special needs planning associated with the attorneys. Now we go with costs and people shy away from costs. This is it’s an expense. I’m not going to shy away. You cannot do this online and do your own will and you can’t pay $500 for it either. But most of the time this is a one time cost. It’s controllable. It’s life changing for you.

I have to give you one example. I talked to clients and when one client said I have a problem with this amount of money. I literally I was managing the account. I said, I’m going to stop your retirement contributions for X amount when we reach the amount of what the attorney’s fees are. We’ll turn it back on because honestly, Adam, if you’ve not done this planning, the retirement money doesn’t matter. You’re going to have a lot of other problems before you get to that. So focus. Do your priorities. It is not overwhelming the cost. It really isn’t. But do not not go for fear of what the cost would be.

Adam Dayan: Let’s pick up on a term that you just mentioned, which is funding the trust. What does it mean to fund a special needs trust? How do parents go about this?

Bruce Maier: So funding a trust is important, too many times individuals will come to me and say, I’m all done. You were never all done. That’s the one thing and I’m going to refer to that a couple of times because it’s an important point and I’m going to stress it. But their perception and even sometimes attorneys’ perception because that’s their role and they’ve completed their task, but the idea of it’s a two part. You can set up the trust, but you have to find the vehicle to fund the trust. And these are different vehicles. I’m going to give a couple of examples of what types of vehicles.

So we have to set this in motion that these funds will be available, whether you fund it early on, whether you fund it at time of death. We can discuss that going forward, but they have to be identified as what funds. Let’s look at a typical family. And it’s a very interesting one. Individuals are determining what part of my assets do I need to fund this trust versus the assets that are going to go to my other children or my other beneficiaries. Typical family, let’s say, the typical parents’ responses, I have three kids, I’m going to give a third, a third, a third. And it doesn’t matter what types of assets they are. In a special needs situation, we have to drill down a little bit more. We have to identify and prioritize which assets go to Johnny or Johnny’s trust and which assets go to my other kids. And it all goes back down to the original definition. May not be financially independent. So let’s just take an example of certain assets that we all have. We have our house, we have our retirement assets, we have cash, we have life insurances. Those are your basic, basic assets that you have. Do I want to leave my home to Johnny’s trust? Because maybe when I pass away, the market might not be that good, it might take time to sell that asset back to the definition. Johnny’s not independent. The trust can’t wait for that because guys, you’re no longer here to supplement or to fund. So let’s look at the type of house, may not be the appropriate type of asset. I’m going to the prioritizing of assets. And assets, retirement assets did have a tax component that when somebody inherits a retirement, there are taxes involved. Again, Johnny’s not able, independent to pay these taxes. My other two kids, so maybe they’ll inherit a little less. There’s been a little change in retirement assets. We could do a whole other situation on that while it was not good to have retirement assets. Now, we do have to reevaluate whether retirement assets might be an appropriate asset to leave to the trust because there are some tax limitations that they don’t have to pay taxes when they inherit it. It’s called stretches that you don’t have to pay. They’ve put in that individuals have to pay it within a 10 year period. But if the individual, well, namely, the trust is disabled, that stretch goes away and you can really stretch out those taxes. So as individuals, and even if individuals have been already advanced in their planning, let’s reevaluate that and talk to whomever, your advisor, talk to us or whatever, saying I might do a little switch on that because it’s just been the past two years that we could focus.

Other assets, marketable volatile assets, does who I want Johnny to inherit? I can’t tell I’m going to die. Do I die when the market crashes? And those assets are not at a low point. I don’t want the trust to inherit that Johnny’s not independent. My other two kids, it’s fine. They can wait. So again, look at different types of assets. I’m keying into an insurance policy to be probably the best vehicle to fund, not a term insurance because again, that expires and we don’t know when we’re going to pass away. So permanent insurances to be with a beneficiary is not Johnny. The beneficiary is the special needs trust of Johnny. But let’s look at the four positive natures of the insurance. Number one, it’s a defined amount, whatever death benefit you have, not going to go down. Not going to go up, but you control. So you control that dollar amount for your financial planning that you have. One, peace of mind. Two, not taxable, also a peace of mind going forward. Number three, the most important insurance policy is paid within one or two weeks. That’s crucial for a trust to get these funds as quickly as possible because everyone’s now shaking their head. They know the original question. Johnny’s not independent. He needs his money faster and not probate. So when you have all of those positive things, it creates the efficiency of the proper vehicle. Again, every situation’s different. Everyone should talk to their attorneys, their financial advisors. But don’t say you’re done if you haven’t identified the vehicle to fund the trust.

Adam Dayan: How much do you have to put into the trust when you open it?

Bruce Maier: So this is a good question and you may not have to put anything in the trust. And again, this trust is to supplement Johnny’s life as long as parents are alive and they’re managing and they’re going to be able to supplement the trust unless they have dollars. You can find some dollars that were just sent to Johnny by lack of control or an inheritance that Johnny may have gotten or different things. Those things have to go into the trust very quickly because again, we can’t have anything in Johnny’s name. So the trust should be established. Trust accounts can be established too and can funnel when funds want to come in there at your choice. But the key is if you’ve identified vehicles of when to fund the trust, they can really be at the time of your death. And here’s the other word that people think and that we can really drill down to the word. They’re called springing trusts. And again, most people say, I have no idea what a springing trust is. I’m not going to look at it. I don’t know. A springing trust is that this trust comes into effect when the will comes into effect. So when you pass away the dollars or the assets you have identified to go into the trust springs into effect. So now springing trust doesn’t become so overwhelming. It springs into effect when the person dies, the will comes into place. The springing trust, as you know, is incorporated in the will and then the assets are defined to go into the trust. So as to timing, respective to every individual, they may want to say, I want to be done. I want to have X dollars to go in. Fine. Those are. We manage special needs accounts. But most of the time it does not have to be an initial amount. The vehicle has to be set up and vehicle has to be identified.


If you like what you are hearing, please let us know by subscribing to the Curious Incident Podcast and letting other special needs parents know about it too. If you have thoughts, questions, comments, or would like to suggest ideas for a future episode, we’d love to hear it. So email your feedback to podcast at

Adam Dayan:

Bruce paint a picture of how you work with your clients.

Bruce Maier:

So I really, first and foremost, I want to be a resource to the clients. Come to me as a resource. Let me spend time with you to understand your situation, to have us have an educational process similar to what we’re doing here and making parents aware of what needs to be done. And then I start building the team. The team will be my first is, of course, as we identified, the will and the legal aspect involved.

Adam Dayan:

Even before you get there, that initial step you mentioned of being a resource and giving information is so valuable in and of itself because parents oftentimes know they need to do something, know on a gut or intellectual level that they have to plan financially for their child’s future, but they don’t know where to begin. They don’t know who to contact. They don’t have the information that they need. Correct.

Bruce Maier:

Correct. And it’s just, it’s getting the word out. I talked to a number of pediatricians and I really stressed to pediatricians because that’s the first place parents go. Parents will go right away to a pediatrician if they think they’re something not right. And they look at a pediatrician to be a very source of information and resource. And I really find the pediatrician to be so important in some cases to say, you know what, we have to start planning also. And the reality is the pediatrician or as any doctor can have the advice of what the future is going to be, whether we like it or not. But I’ve seen many pediatricians that are coming in saying you do need to find, you do need to educate yourself. You need to be an advocate. But once you get educated and once financial planning is really done on a one-time basis to start, we continuously monitor it, but the objective is do the financial planning, spend the time now that you may need to do that, pay the money that you might need to. But once done, you can now focus 100% of your time on Johnny. But if you’re spending 100% of Johnny and you’re not planning and you’re getting ahead of yourself, it’s not worthwhile.

The stress that I want to do is on siblings. And I think so many times I do want to bring that up. Bring a sibling of an individual with special needs, and that’s also planning, and that’s also important in the legal process. And we’ll go into a little detail of trustees and things like that. But the key is you want the sibling to want to take care of their special needs sibling as opposed to have to take care. It’s a very strong way. And I want people to realize that have to want to. The key of what my approach is, and that’s where I want to start early with siblings. We got to do this as a whole family operation in the sense of communication.

And I alluded to building a team. The team building of building attorneys and building other caregivers, et cetera, is I sometimes focus myself as being a general contractor. What is a general contractor do? He sets the plan. He says, this is the way we’re going to build your kitchen. Now we need the people to get the cabinets, the floor, and everything else, and the plumber. And oh, by the way, we need all of the government regulation to make sure that we get the permits. It’s very similar. So I’m getting the attorney to put the cabinets in, or we’re doing the attorney to make sure that the regulation is there and we’ll get the permit.

Adam Dayan:

I don’t know any attorneys who know how to put cabinets in.

Bruce Maier:

Exactly. But that’s how we’re trying to build that, we’re building that team, and then everybody’s working together in communication. But we got to reach out to the siblings too. I really think, in my next life where I’m really thinking of writing a book being entitled The Lost Generation. And why I say that, I say the lost generation is being a sibling of a child with special needs. And while it sounds heavy, the burden that these siblings take on in their lives is overwhelming. And they don’t, I really, every time I do a plan, and it depends on the age, I ask to speak to the siblings. But when I tell that sibling that parents have done everything in accordance that they’ve done their proper planning, that Johnny will never be disqualified, that the funds are there to make Johnny’s life supplement everything’s there. And your job as a sibling is really just to love, take care, be the social aspect of it, and just be there. And I think it’s so important, and you see the brick that is lifted from a lot of siblings, when we open the communication.

I honestly tell it depends on the age I say to a sibling, when you’re dating, at what stage do you tell the other person that you have a special needs sibling? First date, second date, third date. And honestly, Adam, you see the individual really relating because it’s never a question they’re going to ask their parents, never. And I say, if you’re comfortable and you know all the planning has been done and everything has been okay, you’re going to be easily to be able to say that on the first date, and you’re going to take this baggage off. And honestly, Adam, if the person on the other side is still not comfortable, that’s not the person you want to be with in the first place. But that’s the key.

Adam Dayan: I have to say it’s really striking a chord with me. I’m sure it’s striking a chord with our listeners. I hear this so often from the parents, I represent how it’s helping their special needs child is affecting the other children and the family and the dynamics that are at play when support or attention is going to one child, sometimes at the expense of that child’s siblings. What a relief it must be for the siblings to know that the financial planning is taken care of, and they can focus on being present and loving with their sibling.

Bruce Maier: Absolutely. And this goes through what’s not only that age related. They have many clients that have siblings that are older, and they’re relating to that too. And grandparents making the right planning. This is a multi-generational type of situation that we have to do planning. But siblings so often get overlooked, and it is so important to address what they’re going through. Not only have we overcome three years of the tough, tough time of anxiety and mental wellness, and it’s not just a disability and special needs, it’s affecting all of us going forward. To talk about an individual that has a special needs sibling and dealing with their own anxieties as we all have, and we all are doing now, and add that on, we as parents don’t want that. But again, many times we as parents don’t know how to correct that. Use people like ourselves to be that intervention.

Sometimes I call myself a financial therapist in that, and I don’t look at that negatively. It’s really true. In the long run, parents will be more at ease knowing that. So let’s look at the parent going through their stages of life if they have done everything properly that they know child will not be disqualified. They have done everything there that there’s financial viability. They also know now that their siblings will want to as opposed to have to. Well, now the next goal is in which I then come into the process in the families because I ask what the parent’s goals are. It’s okay for parents to have their own goals. We’re talking parents that are in their 40s, 50s, 60s. They’re going to live till they’re 90. I don’t want a parent to always think that whatever their spending is taking away from Johnny, they have their retirement. They have their lives to do. They have nothing to feel negative about or a shame. But if they’ve done the planning, if they’ve spoken to people like yourselves and the attorney side, people like me, they have this peace of mind and assurance now focus on your life. It’s okay to do that. It should be. So that’s the whole role of that initial planning and how it really, it’s a holistic type of approach that you do.


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Adam Dayan:

What does a trustee do?

Bruce Maier: This question of what a trustee does and there are several different types of trustees involved. And when you go through the initial legal process, you are asked to pick who you feel as trustees. We do feel that trustees, even in typical families that anyone else there, we should pick relatively younger people or people not our own age as parents because we want this document to last again for two generations. But a trustee can have a financial aspect and many a times I have clients that say, okay, I have two kids. My one child does not know anything of the financial side and my other child really takes care of the loving aspect of the social. So you can have trustees that are just related to the financial aspect of running the trust. And that financial aspect will be when to disperse funds, when the funds are needed to supplement Johnny’s life. So they’re in control of that.

When you have some other trustee that can be more of a social, that that trustee is determining maybe this is the proper group home that Johnny should go in or not going forward. And then you’ll have the other parts that are called trusted advisors that oversee the situation and other advisors that can be replaceable. You can have a situation that you can replace a trustee. But you’ve got to have a trustee and then a line of what happens to that person going forward. So trustees have many, many roles.

There are also an additional trustee that can be an outside trustee. And those are situations where banks and other areas that have fiduciary responsibilities that can act as a trustee. Many situations you have parents that really they don’t have any place to go to. They don’t have other trustees. They have no other children, let’s say. And they don’t have anybody that’s most of it would be people their age group. So they’re very concerned. What’s going to happen with Johnny when I’m no longer there. So there is other types of trustee services that are available. There are also nonprofits that are doing this type of charitable remain to trusts and those types where individuals come in and there’s two parts of that trustee.

The trustee will act as the financial aspect of it. And then the other trustee will act as the social aspect of it too. So trustees, outside trustees play a very important role. These are usually assessed at that point only at the time of death. There’s not an ongoing fee that they have, but there are the language that these trustees have are then work with attorneys like yourself that incorporate that into your original documentation. And then they have their trustee information when they take place. So those individuals that say I don’t want to address it because I don’t even know a trustee. Don’t procrastinate really. There are different sources and there are different solutions going forward.

Adam Dayan:

I think this is such an important point. You’ve mentioned autism. You’ve mentioned an example of bipolar. It’s not limited to those disabilities. What other issues should listeners be thinking about when they’re trying to determine does this conversation apply to my child?

Bruce Maier:

There are so many disabilities that these vehicles are applicable to do. When they’re government aid and all of these situations are available to a whole range of disabilities, it’s the Disabilities Act. The one thing that we have to stress also is that mortality rates of people with disabilities are the same mortality rates that you and I have at them. It used to be where some of the situation with Down syndrome or cerebral palsy had to find different types of mortality unfortunately. And honestly in that aspect, most parents really just thought that they would outlive their children. The situation is not like that. Thank goodness. But the mortality of an individual that may have cerebral palsy or even Down syndrome or even autism, those mortalities can be just the same as us. Hence you have to plan. For example, the bipolar situation, the individual that might have depression, they might need the government assistance at that point. So let’s make sure this does apply and also deafness and blindness. There are different things that have to be put into place.

Adam Dayan: Some parents get scared by the word irrevocable. What does irrevocable mean in this context are the plans flexible if one’s life circumstances change?

Bruce Maier: In this case, Adam, I’m very passionate about that because I think too many times we look at irrevocable being this four-letter word. And tends to be that people look at this irrevocable and it turns to procrastination. And it’s very evident in the autism community. They see irrevocable. They say they don’t want to do any planning that is not changeable. That’s the first perception of irrevocable. It’s not changeable. And quite frankly, they’re saying, I don’t want to set the tone that I am putting for my child. If I do irrevocable, Adam, they’re going to say that I in my own mind have set the tone that Johnny will never succeed. Do not procrastinate for that reason. Irrevocable is put into documents to make them legally viable in the situation, but it is changeable in certain things. It is flexible. Most importantly, irrevocable and be based on a beneficiary sometimes that we deem. And beneficiaries can be changed. Everything is changeable. So don’t procrastinate because of the word irrevocable in that sense.

Adam Dayan:

I’m just thinking of listeners who may be thinking, my kid is not going to be able to mainstream. And for some people, that’s the case that they’re so significantly impaired that mainstreaming is not really an option for them. Do you want to add anything that addresses the people for whom mainstreaming is not possible?

Heather Deutsch:

Absolutely. Okay. My child may not mainstream. I mean, honestly, I think planning should be done early stages, whether or not. But let’s be honest. In the sense of not mainstreaming, we do have to do all of this planning early on because we can’t control when we’re not going to be here. And most importantly, we want to control that we have everything in place that the people who will be here after we’re not here will have an easy transition for my child who is not going to mainstream. So we know that this is going to be a lifelong situation. In our parents’ peace of mind to set everything to make this transition much easier going forward.

Adam Dayan:

Any special considerations for parents who are separated or divorced?

Bruce Maier:

You bring up good point. It’s a statistic, Adam, that is a tough statistic, but it’s a true statistic in the sense that the divorce rate runs four times the rate in a special needs situation. And this can be understandable. The pressures of life added on having an individual or a child with special needs. I want to stress the one part of planning in individuals that are going through the situation. And I also open up again being that financial therapist or having clients come to us early on even if they are thinking that this is… And you know what? In the situation, it might be the right thing.

It’s not negative where people are saying, oh, I’m going to stay on just because of a special needs situation. In the long run, it may not be healthy. And it may not be healthy to siblings for going forward. But the one thing that’s common in the one thing that planning is involved in legal aspects is that a divorced or separated couple can do the same proper planning. No matter how their relationship is pursuing, because deep, deep down, I do think no matter how tough that situation can be, there is a common interest. And the common interest is the well-being of their special needs child. And I think that that should be open to individuals that even are thinking about that. It’s okay. And the planning can be the individual that has special needs can still be addressed. Life insurance is even can be done. You can have a second to die policy even if the family is divorced as long as the interest is your special needs trust or your special needs child. And even if two parents can’t get along, we can be in separate rooms and sign the same documents at that point with the ultimate objective that the special needs child is protected.

Adam Dayan:

Talk about the purpose of a letter of intent and life plan.

Bruce Maier:

Letter of intent is not a legal document, but it really goes through the details of what it is to take care of a special needs child and certain that are not legal. And there are, we have different publications if anyone is interested, we can easily provide to that. There are also things online. But these go into more detail where parents can get together and others making this document available when you’re not here anymore to really make it easier, make it easier for the transition for caregivers for the other siblings to do this. It’s not something that can be done right away. It can be done over time. Parents can get together and start composing the letter of intent to add to it as a supplement to the legal documents that you’re going to do.

Adam Dayan:

Any special considerations when it comes to health insurance?

Bruce Maier:

Very important that individuals know. So number one, Medicaid in the world of disability is not a four letter word. Medicaid is very important. I think many times we view the misnomer about Medicaid is, oh, that’s only for people who have no dollars. It is people that are going into a nursing home. It’s the worst thing available to us. Medicaid is very important. There are Medicaid subsidized types of programs that are very important that individuals need to do. Medicaid waivers for early on that an individual have. But the key on medical insurance is if you have group insurances at your work, there is part that you can cover your children up until the age of 26 and then they afterwards have to have their own separate insurances. However, if you have a disabled child, that child stays on your plan as long as you are working. And if you retire at age 65 and Medicare comes in, then Medicaid or Medicaid will come into place to be the supplementary plan for your child. But that’s a very misnomer. A, don’t shy away from Medicaid. Take a look at it. See if your child is Medicaid eligible. Sign them up for Medicaid. Do the Medicaid programs. These are life changing and these are important for every special needs parent to have.

Adam Dayan:

Consider the most common mistakes caretakers of dependents with special needs should be sure to avoid.

Bruce Maier:

Not doing any planning. That’s number one. But while if they do the planning, they may have done certain things that again, a second opinion improper beneficiary designation. And we just alluded to that of that contingent beneficiary, you know, reviewing the beneficiaries. Some stories of disowning my child completely that they don’t get that $2,000. No, we’ve uncovered ways that we can prevent that to supplement. But that’s a common mistake. Oh, I’m going to leave all my dollars to my other two children and they’ll take care. Well, that goes back to have to and want to. Don’t do that. There’s also a lot of tax considerations that are sort of not addressed early on where financial planning is important to go. Again, when we looked at the prioritizing of which assets going forward and not having the right trust, too many people think they have a trust, but it may not be a special needs trust or it may not be properly worded. So what we’re both stressing is this the review, the continuous second opinion review your legal documents, even if you’ve had them and if you’ve had the special needs trust 10 years ago, really reach out, just get that second look to go forward to get your peace of mind.

Adam Dayan: Now, I’m sure we could spend a whole entire episode talking about able accounts. We won’t do that now. But briefly, what is an able account and how does it differ from a special needs trust?

Bruce Maier: So I want all the listeners to really look at this. And again, it looks at any type of disability that an individual can have an able account. The able account is in the disabled name. It’s under their social security. It is looked at as that type of account again, where government benefits will not include that in your $2,000 means test it. It’s a lot flexible, very similar to a special needs trust, but it has dollar limitations in the sense that you can only put $17,000 per year, total of $100,000. But look at this as almost like a checking account for your special needs child, a way of independence, a way of sometimes getting a check that’s in the special needs child’s name. You don’t know what to do with it. You don’t want to put it in their own account. You can invest it in an able account.

So I urge all families to look at this online also to reach out to an advisor, to myself, to Adam. But I really want to stress that able account is really the ultimate peace of mind. It’s almost like that what if situation? It doesn’t take the place of a special needs trust, but it certainly should stand next to a special needs trust as a funnel of doing in its investable, very similar to a 529. I want to stress that the dollars can be used. You can take the money out of the able account for expenses that benefit the disabled’s life. And it’s a wide range. I had one client that asked me, can I take the money out and put a down payment on the house that we want to buy for our individual? This able account is widely used for people who are blind and deaf and disabled. They’re even using it to purchase a car. All of these things that not get included, so I urge you all to go online, look at able, reach out to us to go a little further detail. Anyone can open it up on their own for as small as $25 to start with.

Adam Dayan: What other resources can special needs parents review to educate themselves further and develop a more complete understanding?

Bruce Maier: We all know you got to be an advocate for yourself. You have to be aware of what’s going on. You also have to be aware of the state that you’re living in or if you’re thinking of moving to another state. And there are different organizations that are involved that will tell you this is a state that is great for individuals over 20 or this is great for individuals younger. So be aware of these organizations. Get yourself educated not only on the overall rules and disqualifications, but also looking at the state specific. That you’re doing, Adam, this is the type of educational resource.

The American College, where I got my designation of a chart, especially it’s consultant has a number of readings out there and look at different organizations, but keep yourself be an advocate, keep yourself aware of all of those things. I do want to stress one other thing before we end and that’s on group homes and things like that. Don’t look at that negatively in the sense of sign up early, even if you think it’s not the right place, at least get them on a waiting list and it’s 10 year waiting lists on this. And when that name comes up, you do not have to choose to go to that. You can pass, but I do stress get on the list because again, situations get elevated when parents pass away or situations where something needs to be done. But the only way they get elevated is if that name is on the list and not on

Adam Dayan:

That’s a really important point, I’m glad you mentioned that on the podcast episode before yours. We just had somebody discussing her experience, a horror story that she went through trying to secure a group home for her son. So I’m really glad that you brought that up. Bruce, where can our listeners get more information about you?

Bruce Maier:

I have a, you can just online, I have a website on I and Birch advisors or going in and just following up on my name and there’ll be a wealth of information and contact information is available to please reach out. Again, all of these conversations, I really want to be viewed as a resource. There’s no financial commitment at all. And I really urge let’s have that conversation.

Adam Dayan: Thank you so much for collaborating with me on this episode. This is such an important area for special needs families to be aware of. And you’ve provided a great deal of information that I know will be helpful to them. I look forward to keeping in touch and finding ways of helping special needs families prepare financially for their children’s futures. Thank you. Thanks, Bruce.


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