Embracing—and Planning For—Neurodiversity

Audio Description

The day their child receives a challenging diagnosis marks the beginning of a lifelong odyssey for many families. Bernstein Principal Karen Park knows the feeling. She shares her passionate pursuit of a self-directed life for her son Milo, “patient zero” with a rare genetic mutation. From the time Milo was only four—and neither walking nor talking—Karen was determined to put him on a path to autonomy. Today she shares her hard-earned wisdom with families looking to solve the crucial planning challenges that arise when planning for the lifetime needs of a disabled child.

Transcript

00:06 - 00:37

Welcome to Women & Wealth, I'm Betta Kirr, Co-head of Investment Strategies at Bernstein, and this podcast aims to educate and inspire women to make the right choices for their wealth. Hello, everybody. April is Autism Awareness Month, and the goal for the month is to more fully integrate the one in every 54 Americans who are living with autism into our social fabric. And we wanted to use the backdrop of Autism Awareness Month to shine a light on disability.

00:37 - 00:58

more broadly. Inclusion and integration means helping disabled individuals live their fullest possible life. And I'm really fortunate to have an in-house expert on this topic with me today, Karen Park. Welcome, Karen. Thank you, Beata. I'm so honored to be part of your podcast. Thrilled to have you at Bernstein

00:58 - 01:16

and here today. Karen has worked in our San Francisco office for over 17 years and is also a mom to Milo, who is a complete dynamo. So I want to start by really describing more of Karen's story. And, of course, Karen will jump in here with the details.

01:17 - 01:49

But Milo was born in 2010. And I remember you say you assumed based on the prenatal testing, that he'd be a healthy, typical child. Instead, he was in the NICU for 10 days after his birth and had a series of anomalies that were evident soon after he was born. Remember, you were told that he was unlikely to walk or talk by age five. He proceeded to have six surgeries in the first three years of his life. And that's obviously a very rough start.

01:49 - 02:20

I'll let Karen fill in the rest of his story. But before she does that, really just set up our conversation. As a result of being the mom of Milo, Karen has very much become an advocate for families with children with disabilities and has also been an incredible support in terms of all the financial and wealth planning needs that are so specialized and required in this space. So that's really what we're going to have a conversation about today. So let's get back to Milo.

02:20 - 02:31

Tell me more about those early years. Well, Beata, it was a pretty rough start. And to top it all off, we didn't know why Milo had all those challenges that you mentioned.

02:31 - 03:05

There was no confirmed diagnosis. It wasn't until he was almost four years old that we had an exome sequencing done. And we realized effectively that we were patient zero for mutations on a gene called KDM1A, otherwise known as LSD1, for any geneticists listening to this. So we partnered with medical researchers to publish articles on the mutation. We set up a website to connect with other families. And we now have a global tribe of about 20 families whose kids have a mutation on this gene.

03:05 - 03:17

So it's pretty rare. And I have to say, I don't know about you, Beata, but I grew up in a world where disabilities weren't seen or heard. So this past decade has been a journey of enormous growth for me and my family. I'm sure.

03:17 - 03:32

And we're going to talk about your experiences in more detail and certainly your learnings and advice for families in similar situations. And before we talk about what Milo's up to these days, I just have to comment on the incredible access to technology that you had.

03:32 - 03:55

I remember when we first met Karen, you were telling me that Milo was patient zero, that you had done this sequencing and that you were looking for that tribe. So it's incredible to fast forward to today and see that you found that tribe, not 20 people is not a lot, but 20 people, I'm sure, is much better than one, on your own, you solving for this situation individually.

03:55 - 04:10

And so the wonders of technology and medical innovation and genome sequencing, it's great to see that it can really apply here. And in many ways, if you have the access, of course, and the means to be able to find that partnership, it's just remarkable.

04:10 - 04:44

So what's Milo up to these days? Well, he's a busy guy. He's got a lot of friends, he's very sociable. He's described by his friends as being sassy, clever, mischievous. He loves reading. I heard at his parent teacher conference last week that he is crushing it with fractions and decimals. So he's on grade level there, despite hating, absolutely hating all other kinds of math. I'd say he's ambitious. He's a daredevil. He loves roller coasters. And he's kind of high profile.

04:44 - 05:18

You know, everybody knows him at his school. He's in general education, not in a segregated classroom. So he really stands out. That's awesome to hear. So it sounds like he's made terrific progress. And obviously you've had the means to continue to surround him with support. And I can absolutely relate to your earlier comment about when I was growing up, kids with disabilities simply weren't in my classroom, and today, just like you said about Milo, my own children really pride themselves on their interaction and friendship and support with various kids in their classroom.

05:18 - 05:25

They have several kids with autism and Downs. And so I think it's wonderful that the classrooms have become integrated.

05:25 - 05:51

And what else would you say about what's made this work for you in this point of view? That's a great question, because it is a lot of work. I think big picture, my long-term goal for Milo is for him to live a self-directed life. And I realized back when he was about four years old that I could put him on this path to autonomy, even though at the time he was barely walking or speaking.

05:51 - 06:25

I just needed to put in place the right supports. So thanks to great laws, federal laws like the Individuals with Disabilities Education Act, we were able to do this. So Milo's in general education and thanks to the IDEA, he has legally protected accommodations that cover a ton of ground because his disabilities are complex. So we have advocated for accommodations with communication. Milo uses a robust alternative communication app on an iPad to augment his verbal output, which is otherwise limited and hard to understand.

06:26 - 06:46

He has accommodations for writing. There are wonderful apps and tools out there for kids like Milo who can't physically write with a pencil, but they can still produce essays with the appropriate supports. And of course, Milo also has accommodations for mobility because he has low muscle tone and poor protective reflexes.

06:47 - 07:08

He can move around somewhat independently, but there are other times when he's going to need a wheelchair. So long story short, we are truly blessed to have a wonderful school team who have been open minded and creative and supportive of Milo, despite the fact that they've never met anyone quite like him. And we're all just doing what needs to be done to help him be the best that he can be.

07:08 - 07:33

While you're doing so much, Karen, and obviously building a village of support around you, which seems like a full time job in itself. But in the meantime, you actually have a full-time job as an advisor. And and also you've partnered very closely with some colleagues, specifically Andi Kushner and Ashley Velategui, because today's conversation is the first in this two-part series

07:33 - 07:51

where we are going to be focused on this topic. And together, the three of you have really established a national practice here at Bernstein to advise families with disabled children. So do you want to talk about how that collaboration got started and how you thought about your goals for that? Sure.

07:51 - 08:26

I mean, it goes back many years, to be honest. When Milo was born, I was really consumed by his medical needs for the first three years or so of his life. But around the time he turned four or five, I started to wonder how my family could plan for the care he would need for his lifetime. And I found that there was a dearth of good information out there on this subject. And I thought, you know what? At Bernstein, we are in the business of planning. And I knew how important this was. So I had to get on it. And that was the beginning. OK, so that was the beginning.

08:26 - 08:53

And I remember, too, again, this was the time that you and I had met and I was hearing about not only the genome sequencing and the technology usage and surrounding Milo with support. Again, innovation and technology really leading to better outcomes than you would have had in the past and his ability to be part of general education. But here, too, you were learning about planning and the planning needs that were required for you personally.

08:54 - 09:01

I recall you said you found a lot of information that was focused on ways to maximize his government benefits.

09:01 - 09:34

But then there was a big gap when it came to high-net-worth families with disabled children. So do you want to talk about what you learned and observed there? Just to be clear, when we say disabled here, these are children who, due to the nature of their disabilities, they won't have a realistic chance to generate income to fully support themselves. So it turns out that when you are a high-net-worth family, there are additional very complex financial planning considerations beyond just maximizing your child's government benefits.

09:34 - 10:07

So when you have assets, you have to do that and establish a third party special needs trust to capture the inheritance that would otherwise go directly to your child. You have to think about optimizing asset allocation and asset location. You have to determine how to divide your estate between all of your children, because fair isn't always equal and equal isn't always fair. We see it all, right? And housing is another big topic. Ultimately, you also have to figure out how much financial autonomy to offer your child.

10:07 - 10:34

So it's all very complex. And when I realized there were no good planning insights for families about these issues, that's when I reached out to Andi and Ashley and I said, you know, we're Bernstein. Research is in our DNA. We can do something about this. So that was the birth of the white paper, followed by some articles and a soon to be blog post. Yes, we are very much Bernstein and we are very much research oriented. And I know the white paper is incredibly rich.

10:34 - 10:51

So our next conversation with Andi and Ashley is going to dive deeper into some of the research that's in there, especially as it relates to special needs trusts. But I thought it would be helpful if you could share just a few examples of the ways that you've brought that research to life on this episode today.

10:52 - 11:16

Sure. Over the past many years, we have worked with dozens of families on a national basis, ranging from, there's one family who has four adult children and one of them is disabled, but more or less completely served by the government benefits offered to her. But the family was afraid of a rainy day scenario should those benefits go away.

11:16 - 11:45

So they wanted to figure out how to fully fund a special needs trust for that rainy day scenario and then determine how much would be left over for the other three children. So we help them to answer these questions, which enabled both generations to more confidently plan for their futures. There was another family where there were very wealthy grandparents who wanted to fund a special needs trust for their granddaughter from their estate, but not have to incur estate taxes in the process.

11:45 - 11:58

So we helped them determine how to do that in terms of what assets, in which vehicles. And we also helped them to determine how much, how much needs to go into the special needs trust for it to be fully funded.

11:58 - 12:27

So this is wonderful work that we're doing. We're helping these families solve for these crucial planning issues so that they can otherwise focus on being present with their families and living their lives. Yeah, and that is so much of what we do that there's no bright line and no definitive answer. And there's a lot of art that comes with the science in terms of the planning outcomes. And it's excellent to be able to really specialize in this space, understanding the ins and outs of special needs trusts and applying our usual planning rigor.

12:27 - 12:41

So it sounds like you and Milo have come a really long way and it would be very helpful to hear from you, Karen, and share your wisdom in some ways and say, what do you wish you knew 10 years ago?

12:42 - 13:15

Well, there have been so many ups and downs, but for sure, if I could go back to my 10 year ago self and share some words of wisdom, I'd say, start with a vision of the life that you want for Milo and then work backward and find your tribe. For me, it took a few years to define and embrace the vision that we have for Milo, which is ultimately a vision of an autonomous and self-directed life. And I'll say that being a parent to a child with complex disabilities, especially one with a rare or undiagnosed disorder, it can be extremely isolating.

13:15 - 13:19

So you really do need to find that tribe to get through this. It's not easy.

13:19 - 13:44

And it's good to acknowledge that your existing friends and family are very well-meaning, but they probably haven't been through anything quite like this. And they may not always say or do the right things that you need for support. Two of my most valued supports are moms of disabled children with totally different diagnoses. But they offer emotional support and insights to me in ways that no one else can because they get it.

13:44 - 13:54

And then the last thing I'd mention on this is that in terms of my 10 years ago self, I'd say don't do what an expert says just because someone says they're an expert.

13:55 - 14:19

When you have a disabled child, you are vulnerable. Right. You'll do literally anything for your child. And it's good to be aware that one therapist or doctor could be a miracle worker for one family, but not another. And that's OK. It's important to have boundaries and not waste time and resources on things that won't actually help your child. You have to do what's best for you.

14:20 - 14:48

That last piece of advice really resonates with me and the various moms I know that are either in the same position you're in or have children with very difficult diagnoses, and just the sheer time required to wade through the experts to have that gut check of which experts you want to partner with and that feeling of your operating as a team and that you're aligned is so important and just huge shout out.

14:48 - 15:23

and respect goes to all mothers and fathers and siblings and family members that are really navigating the expert network, whether that's doctors or therapists or nutritionists and everybody involved, social workers, you know, one call is rarely enough. It's a constant, let me see five other people and see how that fits with our team and with our family and whether that gut check is there. But by trusting your gut effectively, sounds like very much your advice on that point. So thank you for reiterating that.

15:24 - 15:36

So as you know on the podcast, we spend a lot of time on this concept of five things you need to know. It was really in our introductory episode when we launched the podcast.

15:36 - 16:00

Now, I think over two years ago, what I call the financial boot camp, and the five things you need to know in many ways has permeated our discussions on Women & Wealth. So I think it's only appropriate to ask you for your own personal spin on the five things you need to know for families with disabled children. I love that whole framework of the five things you need to know.

16:00 - 16:31

And I would say that two of the things, two of those five things you need to know are really rolled into one really important concept here. And the two things are know your numbers and protect against worst case outcomes. And the reason these are rolled into one is because with disabled children, you have to plan to support your child's lifetime of expenses, even if they live decades longer than you do. The premise being that the child's living expenses may actually exceed what government benefits offer.

16:31 - 17:00

And then on top of that, you have to plan for an extreme medical emergency or a caregiver emergency in ways that you wouldn't have to for a typical child. So these are expensive life events and the stakes are just so much higher for disabled children. And this is the work that we do with our clients where we help these families ensure how to fully fund a special needs trust while also balancing other goals for the family. That makes sense. That makes sense.

17:00 - 17:32

And is there another one in five things you need to know that comes to mind specifically for families with disabled children? That really jumps out at you? Well, I know one of the other five things is build your dream team, and that just takes on a whole new meaning to that phrase. It takes a village when you have a disabled child. We're talking about planning here. Right. And planning obviously is critical. You have to work with professionals who deeply understand the intricacies of planning when it comes to disabled children. So that would include a financial adviser.

17:32 - 17:45

But it's also going to include, I hate to say this, but several attorneys. Right. So you're going to need a great estate planner who has done special needs trust work before. I wouldn't use someone who doesn't have that experience.

17:45 - 18:09

When your child is in school, you may need to consult with an IEP attorney at some point. And then when they turn 18, you may have to work with an attorney to set up a limited conservatorship for your child. So several attorneys that you work with during the course of your child's life. You'll want to have an accountant who understands the ins and outs of irrevocable trusts, possibly also an insurance broker.

18:09 - 18:41

So it's a pretty broad planning team. I may jump in here with a commercial that's not a commercial to just remind everybody that we get no kickbacks from the legal industry, accounting industry or insurance industry to make these recommendations. The dream team concept in the original five things was fully an acknowledgement of how complex all of our lives are and how rare it would be that somebody would be specialized enough in any of these areas to really do it all. And so in most cases, we see ourselves partnering with all of these service providers.

18:41 - 19:11

And absolutely, in this case, it makes sense that one attorney is not enough. I actually did not know that there were attorneys that specialize in IEPs. And the fact that you call this out makes total sense because understanding the school system and how much time it takes to really advocate for that IEP and test for it and ensure that it's being administered in the right way makes total sense. Yeah. So the professional planning team is critical to get to get all the pieces to fit together.

19:11 - 19:42

I mentioned school and how important school is. You've got to find the right school, the right culture of the school, the right team at the school. It's not just about getting a great education for your child, but that's also where they experience socialization and have the early seeds of self advocacy. So you've got to get that school team right. Obviously, for disabled individuals, you've got to have a great medical team and includes everything from doctors to therapists, geneticists, all of that I mentioned earlier. Having a tribe for the parents.

19:43 - 19:56

You need that support network not just for emotional reasons, but also for getting the right resources for your child and for your family. And don't forget siblings, right. Siblings of the disabled child also often need their own support network.

19:56 - 20:19

And there are great resources out there for that, too. The last thing I'd mention in terms of a dream team is this concept called person centered planning. So any parents out there, if you've never heard this phrase, you can look up person centered planning, you can Google that, you'll find some great resources. The idea here is that there will ultimately be a day when all our kids, disabled or not, want to move on from mom and dad.

20:19 - 20:32

It's going to break my heart, Beata, I'm sure it's going to break yours. I think my kids have already moved on, they are 13 and 10. During COVID, that's clear. They don't want anything to do with me anymore.

20:32 - 21:03

The truth is, they're never going to completely cut their ties, but they want to have an identity outside of the family. And to do this, your disabled child is going to need peers and a community who can help them live their dream and be the best version of their selves. So there's a whole process around person centered planning that involves those peers in that community that long term is going to be the real dream team. So just want to throw that out there for people to put on their radar. It's a big list. The dream team is much bigger in this setting, right?

21:03 - 21:26

Many of these apply for families that don't have disabled children, but a lot more specialization comes into play. Well, I think, Karen, it's been so amazing to see Milo's growth and to see your growth with Milo and really your leadership in this space. And like you said, you're learning. So thank you for sharing your wisdom with us.

21:26 - 21:44

My hat's off to you and obviously all the parents of disabled children that are listening here. Any final words that you want to share? I would just say send out a big hug to all those parents of disabled children who are listening to this. We are collectively on this incredible journey with our kids.

21:45 - 22:03

The families I know in this community are really the best advocates. We know how to fight insurance companies and win. We are devoted, I know we're all just doing the best we can for our kids. But for disabled children, this is taken to a whole new level. And I want to say these families are really wise.

22:03 - 22:36

We have learned to let go of expectations. We embrace our kids. We value them for who they are, and we just want them to be the best that they can be. So, you know, it's important, right? We love them through every single moment. And it's just a, it's a really awesome thing to go through. So I'm eternally grateful to be part of this community. And I'm really happy that at Bernstein we are in a position to help these wonderful families. So I just want to say Happy Autism Awareness Month, everyone, and embrace neurodiversity. Thank you. And I will second that.

22:40 - 23:04

If you enjoyed the podcast and haven't subscribed to our show, please go to Apple Podcasts, Google Play, Spotify, or wherever you listen to subscribe and rate us. You can also find us on Twitter at BernsteinPWM or find me, Beata Kirr on LinkedIn. Bernstein: Making money meaningful for individuals, families, and foundations for over 50 years. Visit us at Bernstein.com.

Host
Beata Kirr
Co-Head—Investment Strategies

The information presented and opinions expressed are solely the views of the podcast host commentator and their guest speaker(s). AllianceBernstein L.P. or its affiliates makes no representations or warranties concerning the accuracy of any data. There is no guarantee that any projection, forecast or opinion in this material will be realized. Past performance does not guarantee future results. The views expressed here may change at any time after the date of this podcast. This podcast is for informational purposes only and does not constitute investment advice. AllianceBernstein L.P. does not provide tax, legal or accounting advice. It does not take an investor’s personal investment objectives or financial situation into account; investors should discuss their individual circumstances with appropriate professionals before making any decisions. This information should not be construed as sales or marketing material or an offer or solicitation for the purchase or sale of any financial instrument, product or service sponsored by AllianceBernstein or its affiliates.

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