027 – Lessons learned from Brian Rubin, an attorney who represents families with special needs kids.

Transcript:

Dad To Dad 27 – Lessons learned from Brian Rubin, an attorney who represents families with special needs kids.

Tom Couch: This is the Special Fathers Network podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network podcast. Stories of fathers helping fathers.

Tom Couch: And I’m Tom Couch. Today David talks to special father Brian Rubin, an attorney who works with families with special needs kids. Brian and his wife, Linda have been married 41 years and have three grown children, Nicole Benji and Mitchell who’s autistic.

Brian Rubin: You know, I have two kids grow up. Okay. Have one kid is going to be a kid for the rest of his lifetime. As our responsibility.

Tom Couch: We’ll hear the Rubin family story and get some Sage advice.

Brian Rubin: We were till threaten Kairos. And you can’t throw the cards in, say, I don’t want to play this game.

These are the cards we have and you do the best you can. It’s our obligation, our responsibility.

Tom Couch: We’ll hear about Brian’s legal work. My practice is limited to fellow families at children’s special needs, intellectual disabilities, developmental disabilities, physical disabilities, mental illness. It’s a story of a father and his family doing a lot of great work to really help parents of special needs kids.

Brian Rubin: We want them to call when there’s questions and that they’d be fearful. There’s gonna be another bill, another bill, another bill hall.

Tom Couch: In this Special Father’s Network podcast. Here’s David Hirsch.

David Hirsch: Being a father is very important to me. I’ve started a number of charitable organizations designed to increase the role of fathers.

One of them is Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. We’ve been interviewing some exceptional fathers of special needs kids and. We want to share their stories with you.

Tom Couch: So let’s get right to it. Here’s David Hirsch’s conversation with special father Brian Rubin.

David Hirsch: I’m thrilled to be talking today with my friend, Brian Rubin at Buffalo Grove, Illinois, a father of three, who is an attorney whose practice is dedicated entirely to serving families with children and adults who have special needs. Brian, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Brian Rubin: My pleasure. Thank you for asking me.

David Hirsch: You and your wife, Linda had been married for 41 years to know the proud grandparents of four grandchildren and parents of three children. Nicole, who’s 40 Mitchell. Who’s 37, who has autism and Benji 33. Let’s start with some background. Where did you grow up? Tell me something about your family, including your siblings.

Brian Rubin: I grew up in the city in Chicago, Northwest side. You have two brothers older or younger? Two older brothers. I was a you’re the baby. I was a baby. My mother said it was the list. Try for a girl. I saw these accidents still rewind my, uh, the NPS the way went up pretty early. Um, I just turned 15 and a couple of weeks after that he passed away. He had a heart condition that runs in the family. My oldest brother, uh, stew passed away a number of years ago. Also a heart condition

David Hirsch: called would have been,

Brian Rubin: um, he was eight and a half years older than me.

So I’m 68. It’d be about 76, 77. Wow. Um, maybe he would be that all today. I feel as if you’re still pissed away at 65. My other brother who six and a half years older than me. Mike is still living. He’s a retired OB GYN. I grew up the two father figures basically, but my older brothers being six and a half and eight and half years older than me were really father figures.

My mom, she was a machine and achieve an early age, uh, lost her spouse and, uh, was a single parent putting my brother through med school. And other brother was a, was a CPA and dealing with me as a single parent since, uh, from my age of 15. And, uh, we moved to far North side of Chicago when I was, uh, about 10 years old.

And that’s, that’s my background. Okay.

David Hirsch: So I know that your relationship with their dad was cut short by as premature death. But when you think about your dad, how would you describe your relationship?

Brian Rubin: My, the was a chuckle for a moment because he was a member of a number of organizations, I guess that’s where I got the book.

But, uh, we’re very hard for us. Again, he came from poverty, so he worked his way through school and, uh, was a self made person. What

David Hirsch: type of work did he

Brian Rubin: do? He was an accountant and also

David Hirsch: a lot of accounting in your family. There was there anybody else, other than a family member that, uh, was an influential, positive adult male role model in your life?

Brian Rubin: My mother was one of nine. Typical, you know, depression, family. And, uh, she had some brothers, especially after my dad passed away and my uncles that were looking out for myself, my brothers and for her that’s how family got to be so important.

David Hirsch: Any particular uncle that comes to mind, you know, one that you had a better relationship with or played a bigger role in your life?

Brian Rubin: My memories are when my brother Mike was, uh, going to go to med school and then I’ll expense. It was going to be that my uncle Mori, um, stepped off and said, you know, I’m going to pay for it.

It has to be emotional. Michael Maury was probably the wealthiest of them all, um, set of pay for it. Then my mother would have no part of it and said, no, this is,

David Hirsch: she was too proud

Brian Rubin: of wanting to do it. Uncle Maury was, if you remember the movie to create. He was the after world war II. Can’t be going to kind of to the plastics business or the

David Hirsch: right place at the right time.

Right. Yeah.

Brian Rubin: And, uh, so you was always there, uh, to do for the family. Uh, somebody’s taking his brothers in for employment and making sure everybody’s taken care of, but my mom said, no, I do this

David Hirsch: on her own. And she did that. Yeah. Wow. That’s impressive. Billy, your mom has obviously played a very, very central role in your life and has helped shape your character.

And

Brian Rubin: she produced the CPA, the lawyer and the doctor. So is it so for her? So close it, her

David Hirsch: it’s the Jewish mother’s dream come true. She was very proud. So you went to school at the university of Illinois, one of my Alma mater. So you also took an accounting degree and then you went to law school. What was it you were thinking when you first graduated from law

Brian Rubin: school will turn into class vehicle.

When I was questioning high school and it was going to go to college, I was always wanting to go to law school. So I was going to take history or political science and have fun in college. My brothers said, no, you have to be able to get a degree that you can get a job. So they said, you’re going to take a County.

And I said, no, I’m gonna take history or political science. Well, I ended up taking accounting.

David Hirsch: So Stewart was the older brother that wasn’t a

Brian Rubin: comment. Right. Right. And, and I wasn’t smart enough to go to med school. So I had to figure it out. All right, fine. And at the time you have, I still, it’s one of the premier accounting schools in the country.

I get an offer. I couldn’t refuse. And I took a position. With a CPA firm. And, uh, it wasn’t too far after, long after that, that I realized I really didn’t like this

David Hirsch: as an auditor and then as a tax. Right.

Brian Rubin: And they decided to go pick a school again, without enough funds to do it full time, the pay my way through it.

I applied and went to law school at night and worked full time as an IRS agent during the day. And stayed there for about a year and a half before I entered a private practice in Chicago downtown loop area.

David Hirsch: Okay. So I’m going to go backwards a little bit in time. I’m out. Out of curiosity, how did you meet Linda?

Brian Rubin: Um, I have over 51st cousins and when there was a male cousin that was, uh, started in their twenties and they weren’t married yet. You received regularly every day, three or four phone numbers from your cousins, aunts and uncles.

David Hirsch: Was your mom always saying, Oh, I met somebody. She has a daughter. And I’d like to introduce you,

Brian Rubin: my man, didn’t my mom.

Let other people do it proudly. I wouldn’t call if she gave you the number. Um, so one of my cousins wives grew up next door to my wife. And, uh, she gave me a number of saying, God, you got to call this girl. She’s going out with somebody that I don’t like. And I said, I have about 10 numbers ahead of her.

And then you call her. And I said, no, I okay. I will find thanks. I did it in about, uh, uh, probably about 10 months later. She calls me, says, you never called her and you have to call her because she’s getting serious with this guy. And this is not the right guy. So I said, fine, I’ll call her. Uh, I would say literally it was probably, we were engaged, but five months later.

Oh my

David Hirsch: gosh.

Brian Rubin: About a year, a little after a year. If we met

David Hirsch: that’s awesome.

Brian Rubin: That was now 41 and a half years ago.

David Hirsch: Congratulations. That’s a great story. So, uh, let’s talk about your, uh, experience with special needs initially on a personal level. And then, um, uh, beyond, so before Mitchell was born, did you and Linda have any connections to the special needs community?

Brian Rubin: You know, when you’re going to have kids, you read all the books and the child is going to hit these milestones at three months, six months, nine months, and they’re going to grow up and go off to college and they’re going to meet the Prince or princess, and they’re going to be there in our Twilight years.

Help take care of us. We call our first born. It was just like that. She beat all the benchmarks. She was a superstar. We are ready to have 25 kids there. Wasn’t Nicole, I’ll talk about how she is right now in a minute. But then a few years later, Mitchell was born and, uh, everything appeared to be fine. And it was a few months later and my wife said, something’s wrong.

He’s not doing what he’s supposed to be doing. He’s not. And I said vehicle, no, no two kids are the same. Girls are faster. Hello. I was going through the first stage that professionals tell us, we go through denial. Yeah. Then we go through a Guild stage, you know, why is this happening? And then say, tell people.

I went to college in the late sixties. We did a lot of stuff from the sixties. So you’re calm. We go through a doctor having stage or could find a factor that has, he has the answer. I don’t think we’ll go through an acceptance stage. We get to a stage where we start learning. Little bit, a little bit of special education and how this world is going to happen.

But we also realized at that point that our friends changed. I think some people thought it was contagious or something because they weren’t comfortable with their kids around Mitchell. So, uh, we knew something was wrong, was undiagnosed developmental disabilities. Or as I used to say, the brains is now working right for natural way.

You didn’t have a formal diagnosis of autism until probably when he was what? Eight or nine years old. Again, the diagnosis has given out much more readily than today than it was back in the eighties, early eighties.

David Hirsch: So I’m wondering, uh, what type of advice did you get early on either from doctors or lawyers perhaps,

Brian Rubin: or just

David Hirsch: other parents who maybe were a little bit farther along, down the road than you?

Brian Rubin: Interestingly enough, the first thing I did is I talked to my mentors at my firm and said, you know, I need help. And they said, well, here, here’s a number. And the people that I will send to her special ed lawyers, and that’s not what I needed necessarily. The pediatrician sent us to a pediatric neurologist.

I remember not going to mention his name or where he practiced because he’s still around. Mitchell was probably about four years old and we were in his office after we did a review of him and analysis. And he said to us, and I remember cause he had to where he was standing in that room. And he said, you could have more kids.

There’s places for people. I could call the institutions and you can go on with your life

David Hirsch: and have more kids.

Brian Rubin: My wife and I looked at each other didn’t even respond. I walked out of the room. Wow. Devastating years later. Here’s the kicker years later. I could have filed a new claim coming in, who is it? Does doctor subsequently get a kid with special needs, turned out to be a client? They never made it into the story to this day.

Wow.

David Hirsch: So that was the medical advice that you got. Um, was to institutionalize them as opposed to there are different alternatives.

Brian Rubin: Every parents said, you should do this. You should do that. Everybody was an expert. Everybody had advice. And all of a sudden the family became the doors of surrounded us. And we became our own close unit because nobody really understood.

They would see Mitch. For an hour here or 10 minutes here, but they weren’t living 24 seven. What’s going through your head is, you know, I have two kids they’ll grow up and be okay and make their own way. I have one kid it’s going to be a kid for the rest of his lifetime as our responsibility. And that goes through the parent’s head constantly is what’s going to happen, whatever.

Okay. It was going to do what I do. Who’s going to care. Like I do. Many of us are fortunate enough to have other children that are stepping up to the plate then, and I’m telling you in my practice over the years, I’ve seen that a good number of us have the overwhelming majority of the siblings turn out to be very sensitive, compassionate people.

I really believe having thousands of clients now over these in practice over 41 years, that I can say there’s always exceptions to every rule, but. A lot of these siblings are just remarkable. People go into special education, going to a, you know, different therapies, different professions if relate to special needs.

And what I also tell parents is don’t forget the siblings because there’s only so many hours in a day and a disproportionate amount of the time is spent with it child with special needs. And we have to remember it is not only MPF did. Our lives as parents, but it is NPS is the other kids. So

David Hirsch: what are some of the more important decisions that you would want to make raising a child with special needs?

Brian Rubin: Let’s start with education. Not all school districts are the same. That’ll special agent education departments or cooperatives are the same and making sure that he’s getting all the resources that he can at school. I mean, What happens early on, so important itself, what kind of quality of life and what his life is going to be later on.

David Hirsch: So if I can paraphrase what you’ve said, it would be better for parents to accept and engage as quickly as they can to get that early intervention.

Brian Rubin: And some parents are afraid of labels

David Hirsch: and don’t be afraid of labels, right?

Brian Rubin: I’m a believer you use labels to your advantage. For a good partial population. I don’t care what the label is.

It’s a matter of, is this going to get my child more services or the services they need? I understand when it’s somebody that’s higher functioning hate that term, but I don’t know what else to use that may go on to a traditional two year program or four year program after high school that you may not want to have certain labels.

I understand that certain situations, but it’s so important to get the services and you have to play the system and work the system. And the system requires labels to get us through it, to get the appropriate services. I think looking for specialists, finding specialists, talking to other parents or groups, uh, finding the right doctors, you know, that all pediatricians understand developmental disabilities or failure rate professionals.

I think it’s very important in networking with other parents. Uh, you know, your friends, I looked at this before your friends change. Some of our closest friends are parents of children with special needs, sometimes fail their family members. Don’t understand what we’re going through. These other family members, these other parents do so support groups can be sole helpful in one.

Uh, as a, as a resource for information and meaning of the right professionals that also just to survive mentally is shear with individuals that are going through what you’re going through. And so that you can understand that, Hey, you’re not the first person that we’ve called through down this road. And if somebody else you meet is going down that road, listen to that here with hear their story, because it can make it a lot easier for you as you go down that road.

Great

David Hirsch: advice. So what are some of the bigger challenges that you’ve encountered on a personal

Brian Rubin: level? Respite. Respite is getting sitters. You can’t use that 10 year old girl next door to babysit. So you’re using services, finding the right services, right? People that can come in and give you some respite some, some time, because you do need the at time.

It impacts marriages. You know, the disproportionate number of families that have children with special needs, uh, end up being divorced. One out of two marriages end in divorce. That’s a much higher percentage when there is a child with significant special needs. So I think, you know, finding those types of support groups can be early at, in participating, listening to other family members and networking with them was it was a big help for us starting out.

David Hirsch: So going back to some of the bigger challenges that you’ve encountered, you had made reference to school where there’s some challenges in the educational environment.

Brian Rubin: You know, people assume that since I was a lawyer I knew or everything I had, luckily got to be very close with a number of folks, very well known school lawyers, special education lawyers, um, did allowed me basically

David Hirsch: to take a step back.

I’ve never heard that term. Special education, school lawyers, there’s lawyers that actually practice.

Brian Rubin: Yeah, there’s a there’s lawyers, the effectors of national association of, of them also that they have, but attorneys that practice in getting appropriate special education services for individual, there are non attorney advocates, but if it gets to appeal, process due process hearings and things like that, the FTE of an attorney.

And because my practice is estate planning for special needs diabetes network, very closely with these attorneys to do a special education cases and, uh, using them to get services. But Mitchell was a very, very difficult case, significant behavioral issues.

David Hirsch: Then just to be clear, what were some of those?

So I can

Brian Rubin: have a better appreciation. We had to put lax and high up on the doors to protect the other kids when he’s having a meltdown and tell them, go into a room and tell Mitchell, calm down. It got to a point where the school district said, we’ll write a check. You take where you want to take them, but we can’t deal with them anymore.

They had special education program that we went to this private one that was tuition to out the term goals. Shortly thereafter. They had said we can’t deal with them, find something else.

David Hirsch: So he went from public education to private,

Brian Rubin: and then we went back to public because I cheered the foundation for special education, digital Lake County, Illinois.

And we went back there and we basically had Mitchell home for several months while we tried to design a program. And regretfully is because of my connections and who I knew in that district that we were able to. Get something going. And a lot of parents would not have been able to do it, which is a CFC at statement.

But, uh, we were able to put together a program with appropriate supports with one-on-one support that MACI had so that, uh, he was able to go, you know, from age 15 to 22, With a program that was very one on one designed for him.

David Hirsch: That’s the exception. I got that one-on-one Oh, you

Brian Rubin: can get in one on ones, but if you have to fight for it, everything’s passable, but everything costs money.

You have to know what your rights are. And it’s what these special education attorneys do is make sure that you’re getting all that it’s possible for that for their child.

David Hirsch: So one of the takeaways would be that if you have a situation that is. Overwhelming or more challenging than average, we’re talking about special needs,

Brian Rubin: right?

David Hirsch: Seeking out additional resources, legal resources, not only from an estate planning standpoint, but from an education,

Brian Rubin: right. Where problem is peanuts are entering the system. The school does just telling them what they’re going to be getting. And they don’t always know what questions to ask. And that’s when the support groups get sold important is somebody to say, look, before you accept what the school is telling you, talk to somebody.

You can explain it to you, other options and alternatives and what might be an add menu that they’re not showing you.

David Hirsch: That’s fabulous. So one of the things that’s coming to mind, I’m reflecting on the advocacy. I’ve been doing the last 21 years for the Illinois fathered initiative. And the mission of that organization is to actively engage fathers in the education of their children with the thought or understanding that when both parents are involved, which means how do we get the dads involved?

The educational outcomes all go up. And a lot of the things are holding kids. Typical kids. If you will, back drug and alcohol abuse, crime incarceration, teen pregnancy, and suicide, all those things start to go down. So what comes to mind is that it’s incumbent upon us dads. To engage, right? Not just deputize the mom or the mother of our children to do everything and educate ourselves and to be as involved as we could possibly be on the process.

Brian Rubin: Exactly. The two parent family, two parents sitting, even if they’re divorced two parents being at the meeting and on the same page as to their child, much better chance of them being successful in getting services. When the single parent is sitting there without the support that the other parent they’re vulnerable.

Yeah.

David Hirsch: Well, there’s strength in numbers. That’s what I hear you saying. It just dawns on me that it’s important for dads to be involved in education, and it’s even more important for dads to be involved with. They have a special ed, so I have to situation. So what impact has Mitchell situation had on Nicole?

Benji. And for that matter, the rest of your family or extended family,

Brian Rubin: uh, number one, um, we’ll start with Nicole. I remember when she came to us one day and said, um, through show and tell at school, I want to bring Mitchell for show until,

David Hirsch: Oh my God. How old would she have been at that time? She was

Brian Rubin: probably about the all seven, eight years old.

Okay. And my wife and I said, No, uh, later on she would, you know, do papers about Mitch as her brother did, uh, papers. And then she actually went there, there, what do they call it when you’re going to college? And they have to write it, the papers and whatever. They both use

David Hirsch: the writing assets. Yeah.

Brian Rubin: But, uh, uh, Nicole was from early on assistant map.

She just took on that role of assistant Miami. And when Mitchell was having difficulty having two parents in the household tech team, Sometimes my voice would work better, but the one neither voice would work. Big sister and Nicole would jump in and she would take care of things. And she, I think became even a better mother that she is otherwise it would have been for three sons now, but Mitchell looks to her still.

He lives in a group home. Now he usually sleeps over at our house one night, a week. Last Friday, he slept over at her house with his nephews as he’s done a number of times. Impacting his nephews. They are unbelievable with that because they grew up with, with them. But she started early on as being the assistant man.

She went into nursing, uh, Benji being the younger brother, never knew any world different than having a brother with special needs. Both kids were selected with their friends. So when a friend came over and they said something, that friend wasn’t a friend anymore. So

David Hirsch: if they didn’t accept me. Right.

Brian Rubin: Um, and Benji of course, is been in our practice now for going on almost 10 years now.

And in the practice of doing special needs planning. And he is president of sibs, which is the state chapter of the sibling leadership network, which is a national association.

David Hirsch: So we are talking about the impact that, uh, Mitchell’s situations had on the call. And then. Ben Ben Jay who’s joined the law practice.

Um, has he had an impact on the extended family?

Brian Rubin: I think like, you know, this generation now having kids with special needs in regular education programs is really helped. I think society understand more about kids with special needs that, um, their kids first special needs. Second. Um, it helped the extended family because there really wasn’t anybody in the immediate family.

A special needs some medical issues, but not a cognitive type of special needs. Uh, so I think everybody became more sensitive to it. Uh, but as it’s they fell, fell. Other families, family members, extended family members can be the greatest people in the world, but they don’t comprehend what it is. 24 seven three 65.

I’m not sure about another parent of child with those type of special needs. You really can’t understand what does it carry with you? It never goes away. There is no downtime. You’re you’re always at, even if Mitchell is not living with you, your child’s not living with you. You’re on 24 seven three 65.

You’re on call for the rest of your lifetime. It doesn’t go away. You’re always had their responsibility. It’s the it’s the big thing is that, you know, one of the expressions that I use is we were dealt certain cards and you can’t throw the cards in saying, I don’t want to play this game. These are the cards we up and you do the best you can.

It’s our obligation, our responsibility. So

David Hirsch: I want to talk about that. That analogy is I think a really good one. I’m playing the hand that you were dealt. Um, and what comes to mind, Brian, is that moms play the hand. Dads for whatever reason, see playing the hand is optional. Why do you think that is

Brian Rubin: maybe the history of the role of math rusty?

Yet? I have felt guilty over the years that I would run to the office and I go to work and Miami, the responsibility of dealing with it. And I have meetings at night or speeches at night go to different organizational meetings. I was on boards, man was dealing with Mitch. You know, and then you start rationalizing well on the breadwinner or there’s a lot of two family incomes.

We okay. The major breadwinner. And that’s why it’s okay. That the responsibility is sitting on a map. But I think not only is it important for the marriage, but for the child, that both parents are actively involved as much as possible. Uh, so I started to do was one night, the practice. When I was downtown, Mitch was born shortly after we moved.

I moved up to the suburbs to be closer to home. So I was not on a train, but then I could be home. That could be in the middle of the day, if something’s come up and said, but now your fathers had the luxury, you know, you have a job, but then they have to find the time in ways being on the weekends or evenings to say, okay, I’m home, I’m taking over, you know, you’re here.

It’s great. But I’ll, I’ll take responsibility. So if there’s things that we would do, like when I got home or what VF time or whatever Mitchell needed, once I got home with my job and she could do what she needed to do and fill out, she’s finding out what she was going to do, the laundry, she’s doing the shopping, she does everything else.

And she’s responsible for the kids in particular, one kid who needed the pair of eyes on them at all times.

David Hirsch: Yeah. That’s a lot of responsibility and it’s just. Texts a lot of your being and not just your time, but your emotional energy too. So let’s talk about supporting organizations. You’ve made reference to one or two of them that either have been directly supportive of what Mitchell situation is and then beyond.

So what role has special Olympics played

Brian Rubin: special Olympics? Mitchell loves. He was, he did when he just came in the room, he’s wearing a metal. He loves metals. Well, he doesn’t understand the concept of teamwork. He’s sports is not his thing. So it’s individual sports. And from an early age through school, he would be in special Olympics.

He went down for state games a number of times. Uh, but I learned on early on, he did not do well with ribbons and medals, but not ribbons. Ribbons is no. So it met also. I always carried a old gold medal in my packet, so they could do a little quick switch or be close to this stand when he got the route.

If he got a Reuben. Sexy actually mature. This is the metal and okay. Maybe everybody else didn’t like that idea, but I know this would be a meltdown. He didn’t have a metal. They always carried metals a

David Hirsch: child.

Brian Rubin: Yeah. Especially, it depends on the level of the child, how much student they’re getting and how they’re getting out of it and what they’re doing.

David Hirsch: Did he have certain sports that Andrew.

Brian Rubin: He’s like cross country skiing until I explained to him that he didn’t like standing outside Nicole and we were going to concentrate on things that were like insight or summer type sports. So we did the cross country skiing one year, but a big one was swimming, which was really great because he learned to swim the extra, whatever from a safety standpoint was really good.

Then when he finished school, we were in our special recreation association, our through our park district. Uh, the Northwest

David Hirsch: suburban special rec.

Brian Rubin: Right. Um, and, uh, I cheered the foundation. I’m still on their board of the foundation board for the special rec association, which ran the special Olympics for many years.

And which still attends classes or programs through them is been doing programs from them since all now going at 30 years, um, doing programs with them. He has a program on Saturday. That they go to different activities equals to some social events, adults, social dances, through them, the it organization also has a partnership with another or where he lives.

Clearbrook they have a number of programs they do together. Actually, I put them together for those employment.

David Hirsch: Let’s talk about Claire. Brooke. Can a little bit more detail. What. Does the organization do sort of on a broader basis. And then what are some of the services that your family has been able to take advantage of

Brian Rubin: their role now serves over 8,000 individuals with cognitive disabilities.

They have a program for young adults called you know, the children’s waiver, serving younger children while they’re still in school under 18. They have programs to serve kids with they’re living at home after 18, they have residential programs. Uh, they have employment programs. They have workshop programs for gamut.

They have senior programs through elderly individuals with IDD, intellectual, developmental disabilities, uh, so that, you know, it’s that some people can retire away. Our kids have to work all the time. So there’s senior programs. So

David Hirsch: from a residential standpoint, how many, uh, individuals to the house,

Brian Rubin: uh, will we’ll have approximately 55 group homes, those range anywhere from one to eight people, we have ICF DDS, which are intermediate care facilities.

Those are all in the residential. And we do residential now, a pretty wide area in several counties now.

David Hirsch: So what are some of the services specifically that, uh, Mitchell is taking? Advantage of, I think you mentioned he’s in one of the residential

Brian Rubin: facilities. Yes. When he finished school, he was in a day program getting job skills and things like that.

When he was 22, he moved into a group home through clear Brook. So those there, they take them to work during the day, take them to a special rec programs. And then generally he comes home on Sunday for dinner. Steve’s over, comes to work at our office on Monday then of course he’s home for holidays.

David Hirsch: Okay.

Wonderful. One of the organizations I remember talking about is the special needs Alliance. What is that? And, um, what is your involvement on.

Brian Rubin: My practice is limited to fellow families of children with special needs, intellectual disabilities, developmental disabilities, physical disabilities, mental illness.

That’s been in my practice. A really suspicion has been born. There is bar associations that people find with associations of attorneys. There is an organizations called special needs Alliance and the ed is a national association. Of attorneys that concentrate in the area of special needs planning. Um, there was attorneys now of 46 States.

So

David Hirsch: just to put a number to it, um, 15 years, 46 States, how many attorneys are there overall? And then,

Brian Rubin: but I don’t know, 50, a hundred, 150 attorneys in the country. It’s by invitation only you have to be in practice a certain number of years, I would say probably two thirds of the members are either parents or siblings themselves.

I was under board for quite a number of years. And then the current president of the national association.

David Hirsch: Where is it headquartered

Brian Rubin: in Tucson, Arizona. Okay.

David Hirsch: Not such a bad place to go. If it’s wintertime

Brian Rubin: and, uh, veggies, a member in Illinois, we have probably one to five, seven members, but of three of the older in our firm.

Um, there’s another national association called the Academy of special needs planners. Yeah, it’s a for profit. The specialties Alliance is a national, not for profit. Um, the,

David Hirsch: the Academy of

Brian Rubin: scaffold planners is a for profit. Uh, so anybody can join. It’s not by invitation. Let’s

David Hirsch: talk about  one of the organizations that, uh, you’ve been involved with

Brian Rubin: cash.

It was, um, formed by parents. It suit Jewish parents of children’s special needs. Initially they had a Sunday school. In a support group. The Sunday school Mitchell has been in since he was four years old and he’s still in there now, and he’s always 37 subsequently they started a, a day school, including all the way through high school.

They, uh, camp programs. I was under board for a number of years, uh, Mitchell, um, attended their school program for a number of years.

David Hirsch: And how about the arc?

Brian Rubin: The arc nationally arc is, um, the largest advocacy group for individuals with intellectual developmental disabilities in the country. Benji’s a member of the board.

Also,

David Hirsch: iPad is not

Brian Rubin: one of the organizations. IPA is a listserv. Oh. Um,

David Hirsch: I think of them as advocating

Brian Rubin: Illinois, parents of adults with developmental disabilities. Right. I’m surprised the Apple has sued them yet for IPO, but Dave, over about 2,500 families. And they’re thinking of adding line supports for parents of Illinois, individuals with IDD.

David Hirsch: Excellent. I’m thinking about advice now, what are some of the more important takeaways that come to mind when raising a child with differences?

Brian Rubin: You have an obligation to child, to the siblings, the extended family, not to put your head in the sand and the plan for the future. That includes the school. Yes, but it also includes, you don’t know when your time is going to come.

They have a client who is a, she’s a nail 11 widow. Her husband was one of the buildings. They went down in that 11th child with significant, special needs. Nobody did any planning. They’ll be worried about it. They were in their thirties. Nobody’s going to die in her thirties. You have an obligation to think the future.

So everybody needs to plan for the future, but it’s especially vital imperative that families for children’s special needs. Think about. Okay. Yes. I got to deal with day to day in school and medical and everything else, but I have to plan for this child’s future. Who’s going to pay for what, how much money do I need for the future?

Where’s the money going to come from? What will the government do we know what the government will do now, but who knows, covered with benefits? Provence was this five years or 10 years down the road. We need to do our homework and plan. Now they had some fear of. It’s imperative to not forget your siblings, because they are going to have the responsibility for the sibling maybe for more years.

And mom and dad had that responsibility. So understanding how this is impacting them, keeping them in the planning process, keep them involved in the planning process. We have an obligation that our child will slightly is going to be here after we’re here. And we have to make sure that things are done thinking about where the child’s going to live.

Don’t assume that they’re going to move in with other children because the other child who says that is okay, they’re ready to get married. They’re going to have their own kids. Things are going to change. So think about where they’re going to live and, and maybe, maybe if they can’t live on their own, you shouldn’t hear them moving into residential opportunities while you’re around to help them make the transition for you to be around that.

Make sure it’s okay. It’s working out. Instead of your other kids having to deal with it or other family members, you having to figure that out. Uh, you always did the child with special needs. Can they live independently? All right. If they can, let’s talk about what, uh, what are the alternatives? How can it be structured?

Uh who’s you know, who’s going to be in charge, you know, what services do they need? Let’s get it in place now so that you have some peace of mind. And this we’re talking about is we want to have some peace of mind. And nobody can guarantee us the peace of mind, but there’s a lot you can do, uh, to go down that road a little.

So that’s

David Hirsch: a good segue to what advice can you share with dads or parents for that matter about helping a child with disabilities reach their full potential,

Brian Rubin: ever accept the fact they can’t do something. Try push them. They said Mitchell could never read. Well he’s memorize words. He’s he can read basic saints.

Nobody taught him. Bush is far as they can go. Maybe they can go to a two year college, the junior college with some assistance. Okay. You know, if somebody is higher functioning, maybe as the Asperger’s okay. You know what? They could work. Maybe they have trouble working in a typical office setting, do online, do this look of possibilities for employment, where they don’t have to deal with it, supervisor, et cetera.

Never accept the fact that they can’t do something we alluded to before one size does not fit all. So don’t tell some that somebody say there’s threesome to calls and the rehab. Which one do you want to put at? No, we’re going to design a suit for this person and keep that in mind when it comes to school, when it comes to employment.

Comes to living arrangements. It’s I am going to look to see what’s the right form maker. Don’t tell me these are only my three options. So what

David Hirsch: comes to mind is coming up with a customized solution, not accepting, you know, AB or C, right.

Brian Rubin: And don’t accept the fact. This is the way it’s always been. Well, it doesn’t mean it has to be that way in the future.

David Hirsch: So if I were to paraphrase again, it would be having high expectations, maybe not unrealistic the high expectations.

Brian Rubin: You’re always in a mode of modification of your plan. We went to a psychologist when Mitchell was very young. His thing was it’s that broken dreams. It’s rearranged dreams. Okay. This is what our plan was for Mitch when he was born.

All right. Our plan is a different plan. Now, you know what we want for him? It’s not that our dreams and expectations are broken through. We arranged, we have different themes and expectations now. But pushing each one of these kids through their fullest potential and you don’t know what it is until you try.

Right.

David Hirsch: And it’s okay to fail.

Brian Rubin: It’s okay to fail. And then rearrange the plan. I love it.

David Hirsch: Not broken dreams, but rearranged drapes. So why did you agree to be a mentor father as part of the special fathers network?

Brian Rubin: You know, in my file that we’ll use. When I present, I have the statement in there that my daughter came up with.

And I said, it’s I say that she says, yeah, you did. It’s about feeling that obligation that if I have the knowledge, the experience both professionally and personally, I have an obligation to share that, to make it maybe easier for the next person.

David Hirsch: Perfect. Is there anything you’d like to share before we wrap up?

Brian Rubin: Yeah. I would like to make a pitch to fishes. One for young fathers, not even young fathers, but fathers that are feeling pushed to the side and involved might be involved. And then for those parents, those fathers out there that are older and seasoned and have been through it. Here’s your opportunity for those younger parents?

The younger fathers it’s, you’re not alone. Just people to talk to. People that have walked in your shoes and there’s a resource here and don’t, don’t waste it. Don’t go to waste. And for those seasoned fathers out there, you live responsibility. Hey, you know what, think about what you would have done differently.

I think about what you would have wished you knew and understood when you were younger and PSTN information and be available, be available for others. That’s great.

David Hirsch: So I want to talk about, uh, these attorneys like yourself that, uh, specialized in serving the special needs community.

Brian Rubin: My practice, I ran the department of 55 attorney from the state plan department of defense attorney from, until Mitchell went on Medicaid and I didn’t need the group insurance anymore.

Back then, you couldn’t get health insurance with somebody with autism, unless you were in a larger organization. So, uh, about, uh, 17 years ago, uh, when Mitchell went on to Medicaid, we opened up our boutique, uh, where our practice is just limited to special needs planning, uh, which includes traditional estate planning and special needs, trust and estate tax planning, but also Medicaid and SSI as is the I planning social security, talking about guardianship powers of attorney and when it’s appropriate and.

And educating the future team, being siblings or other family members, educating them as to what their role is going to be consulting on divorces. So they have people, uh, whether it’s a child with special needs, how much is going to be necessary and who’s going to pay it how it has to be paid that to interfere with government benefits when there’s a personal injury settlement or litigation settlement, how to arrange that.

So it doesn’t interfere with the future government benefits. That’s what our practice is. But we designed it. We said we gotta be different because we’re only going to be dealing with family members of, of people with special needs. And we want them to call when there’s questions and that to be fearful, there’s going to be another bill, another bill, another bill.

So we basically do everything on a fixed fee to do planning. And then when the clients and the members have questions, they call there’s no meter running. Talk about changing beneficiaries or. Can you talk to grandma’s attorney? Cause he needs to make a modification to the plan? Uh, or I just got a letter from social security or Medicaid.

I don’t understand it’s Greek to me, their clients, they call, we talk, uh, you know, it’s way we want to practice. Cause we’re all family members. Uh, even the receptionist has a son with autism. Uh, so it’s all family to family when, when they come in.

David Hirsch: So let me give a shout out to Stacy and Michael McManus for introducing us.

I’m somebody who wants to get information on your work or to contact you, how would they go about doing that?

Brian Rubin: I was suggested to school, to the website, which is  dot com or you bin L a w.com um, all contact information, uh, information about our brand is known a lot of other resource information for families.

A lot of resources, open letter to fill with parents on there. There’s a letter from veggie to fill a siblings on there. So it’s going through the website to find information on there. And, uh, we can provide help to somebody. Great. You just want it to laugh? That’s great too.

David Hirsch: So if a couple has a child or children, uh, one or more with special needs, how soon should they engage?

Um, is there a timeframe like once they’re entering the school system or once they’re at a certain point in the school system that they need to be in contact with an attorney like yourself? Families when

Brian Rubin: a child has down syndrome. Now today’s no, even for the child’s born, we have clients because of Nancy will come in when the child is, when they’re expecting to do planning.

Call question is one of the parents going to be us away is you can see I haven’t each of our conference rooms, crystal ball. Uh, because everybody said, I told them, I can’t tell the future. They say, you gotta get a crystal ball. And so I did for both conference rooms. It doesn’t work. Okay. So, you know, you don’t know how to piss away.

We don’t know what grandma or grandpa took this away and they put provisions in there. If he thinks that your child has special needs messing things up. Okay. You know, so you have to plan it from day one because that’s that just what you do math at the end to be, it can interfere or jeopardize the government benefits of the future.

But it’s what another family member may do, even on intentionally. Uh, your child may not be a primary beneficiary in their documents, but there were the gobbledygook, this versus that alive. It goes to the sentence. There is a law for both of them relatives, something that trickled down. So educating the extended family, you’re doing your planning, educating the extended family.

It’s part of your obligation. That’s great.

David Hirsch: Is there anything else you’d like to say before we wrap up?

Brian Rubin: I appreciate the opportunity to share a little bit. That’s it. Thank you,

David Hirsch: Brian. Thank you for taking the time and many insights as reminder, Brian has just one of the dads. Who’s agreed to be a mentor father as part of the special fathers network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor, a father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org. Thanks again, Brian.

Brian Rubin: Thank you.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process.

New fathers would special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids.

If you’re a father looking for court or if you’re a dad who’d like to offer support, go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: And thank you for listening to this Special Fathers Network podcast, stories of fathers, helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio, and again, to find out more about the Special Fathers Network, go to 21stcenturydads.org, 21stcenturydads.org.