0:21

Hi there, this is Sherri Lund. Welcome to another episode

0:23

of the probate podcast.

0:25

I'm so glad to have you here. This is such an important

0:28

project for me, because it's

0:30

a way to educate the community

0:30

and get information out so that

0:34

you can plan your own estate

0:34

and for your family, protect

0:37

them, protect your assets. And make the process smoother

0:39

moving forward, whatever

0:43

that might look like for you. And so today, my guest

0:44

is Carly Maderer.

0:48

Carly, so excited to have

0:48

her on as a guest today.

0:51

So you're going to want to

0:51

grab your pen and paper.

0:54

Carly is an attorney here

0:54

in the Houston area and

0:57

her specialty is special

0:57

needs estate planning.

1:00

Thank you so much

1:00

Carly for joining me.

1:02

I'm so glad you're here. Yes.

1:05

Thank you. Sherri. I'm glad to be here. Carly's a business and

1:07

estate planning attorney in

1:09

Northwest Houston, Texas. She received her undergraduate

1:11

degree in management from

1:15

Oklahoma State University,

1:15

and then she went on and

1:17

got a joint MBA and J.

1:20

D. from Oklahoma City University.

1:23

In 2015, Carly and her

1:23

friend from law school,

1:26

Gidget Tyler, opened the

1:26

doors of Tyler and Matterer,

1:29

and they are now a full

1:29

service disability law firm.

1:33

They help with Supplemental

1:33

Security Income, SSI.

1:37

Social Security Disability

1:37

Insurance, SSDI, Guardianship,

1:41

Estate Planning, Special Needs

1:41

Trust, and Medicaid Planning.

1:45

Carly and her husband, Jason,

1:45

were blessed with four children,

1:48

Tatum, Piper, Kennedy, and Jace.

1:52

And in 2017, Kennedy was diagnosed with Isodicentric 15 Q.

1:57

It was this life event that

1:57

inspired Carly to focus

2:00

primarily on special needs. the state planning for her own

2:02

family's protection and then

2:05

to help others with theirs. Carly's licensed to practice

2:07

in the state of Texas and she

2:10

uses her personal experience

2:10

and legal intellect when

2:13

advising clients about their

2:13

last will and testaments,

2:16

testamentary trusts, revocable

2:16

family trusts, special needs

2:20

trusts, and powers of attorney. Carly's a member of the

2:22

Academy of Special Needs

2:24

Planners and the Houston

2:24

Northwest Bar Association.

2:27

In her spare time, Carly

2:27

volunteers and donates her

2:30

legal services to the Arbor

2:30

School, which is a children

2:33

with special needs and

2:33

disabilities, the Steel Magnolia

2:36

Moms, which is a non profit

2:36

offering support to moms with

2:40

children with disabilities. The Kardia Christian Academy

2:42

is a non profit Christian

2:45

school, and the Dup15Q Alliance.

2:48

is a non profit alliance

2:48

helping families whose

2:51

loved one has been diagnosed

2:51

with the Dup15Q syndrome.

2:55

That's a lot, Carly, and

2:55

I'm a mom with five kids.

2:59

Of course, they're all adult

2:59

kids now, but hats off to you

3:03

for all that you are doing

3:03

and serving in so many ways.

3:06

Before we get into all

3:06

that, who is Carly as a

3:09

person if I were to meet

3:09

you in the park somewhere.

3:12

What do you like to do

3:12

as a person just for you.

3:15

Yes. I think that, you've already

3:16

described my family life.

3:19

So you know that I'm a

3:19

mom and I'm a spouse.

3:22

And of course that takes

3:22

up a lot of my time.

3:24

And I'm also an attorney,

3:24

but I think that, the big

3:27

thing about Carly and people

3:27

see this a lot, if they just

3:30

bumped into me on the street,

3:30

I love the color orange.

3:33

I am a graduate from

3:33

Oklahoma State University.

3:35

My whole family went to OSU. Okay.

3:38

And we bleed orange through and

3:38

through you know, you could see

3:42

me going go Pokes constantly. We're a huge sports family.

3:45

Always have, we always have been. And even in the Houston

3:47

community, huge sports fan.

3:50

Always going to Astros

3:50

games, Texans, Dynamos.

3:53

We love it all. So it's, great that the

3:54

Astros went back to orange

3:56

because we love orange. So I think that, a lot

3:57

of people that know me

3:59

personally will be like,

3:59

Oh yeah, she bleeds orange.

4:02

That's so cute. We went to, my husband

4:04

and I went to Oregon State

4:06

University, also OSU, and

4:06

our colors were also black

4:09

and white black and orange. Yeah, that's kind of weird,

4:11

but we're the Beavers

4:14

Yeah, we're the cowboys. Okay, yeah, that's better

4:15

than a Beaver, oh gosh.

4:19

Thank you for telling us about that. Can you tell us about

4:21

Kennedy a little bit?

4:23

Yeah, so we had two little

4:23

girls and we were so

4:28

excited to have three girls. So we thought it would

4:29

just be like kind of a

4:31

walk in the park, right? And then life laughs at you.

4:35

So she was born naturally and

4:35

thought everything went well.

4:41

And she didn't have signs

4:41

right away, but kind

4:44

of mama's intuition, I

4:44

knew something was off.

4:47

When she was a baby, she

4:47

didn't track very well.

4:50

There was something going on with her vision. She was very stiff on

4:52

one side of her body.

4:54

She was diagnosed with a lot

4:54

of different things early on.

4:57

Some were misdiagnoses. But I constantly kept pushing.

5:00

I kept saying, I know there's something wrong. I know there's something wrong.

5:03

And then at five and a half months, she started having infantile spasms, which is

5:05

the worst type of seizures

5:08

a little infant could have. And when they clocked her

5:10

on the EEG, she was having

5:12

like 300 within an hour. The neurologist did say, If

5:14

we don't get it under control,

5:18

she will be brain dead, have

5:18

significant brain damage.

5:20

We still didn't have

5:20

the diagnosis of why

5:23

this was happening. But we just focused on getting

5:24

those under control and

5:26

we did, thankfully she was

5:26

put on a lot of medication.

5:29

So that kind of set her back as well. But finally, around nine months

5:32

old, we did genetic testing.

5:35

There was a lot of tests

5:35

going on and everything

5:37

was coming back with

5:37

just a big question mark.

5:39

When we did do genetic

5:39

testing it's called a

5:41

chromosome microarray. It came back and showed

5:43

that she had a duplication

5:46

on her 15q chromosome. And once we got that

5:48

diagnosis, everything

5:51

made so much more sense. I had been on a roller

5:53

coaster for nine months and

5:55

I just didn't understand why. So it was kind of a breath

5:57

of fresh air, so to speak,

6:01

to be like, Oh, we have a,

6:01

we actually have a diagnosis.

6:04

We can pinpoint all these things. And then I got connected to

6:06

the Dup15Q Alliance, which:

6:09

game changer that we have that

6:09

we're so blessed that because of

6:13

genetic testing, our community

6:13

has grown and we have so many

6:16

other families putting an input

6:16

about what to expect at certain

6:21

ages and certain developmental

6:21

milestones with our kiddos.

6:25

So that's Kennedy. I am... she struggled with seizures

6:26

for a long time, actually.

6:29

And we finally got them

6:29

under control after she was

6:32

hospitalized at 2 years old. We had another

6:34

scare with her at 2.

6:37

She had to have 2 rescue drugs. And we are in the hospital

6:39

for a long time, so we didn't

6:41

know what her future held. We didn't know how her brain

6:43

was going to be truly affected.

6:46

But, thankfully through a lot

6:46

of help of doctors, we have

6:50

been in seizure control since

6:50

2019 which still doesn't seem

6:53

possible when I say it out

6:53

loud, but she's doing amazing.

6:57

She's nonverbal. But, she communicates with

6:58

her little squeals and when

7:01

she reaches for things and

7:01

a lot of body language.

7:05

So we've kinda, pick

7:05

up on cues from her.

7:07

And she's just a sweetheart,

7:07

just understands love and

7:11

understands who we are

7:11

and, and what she needs,

7:14

but just some basic needs. But intellectually speaking,

7:15

she'll need help her whole life.

7:19

Just based on the research of

7:19

Dup15Q most of the children do

7:23

not reach over like an eight

7:23

year old mental capacity.

7:26

But that's Kennedy. And then that year in 2019, I

7:27

had just had a baby as well.

7:32

That was a lot that year. But once she was healthy

7:33

and we kind of figured out

7:37

how to be a family of six. I felt like I could

7:39

come up for air finally.

7:41

Those first few years

7:41

were pretty rough.

7:44

Yeah, I'm sure. And in a previous business

7:45

that I had, I was a health

7:47

practitioner and I worked

7:47

with clients who had

7:50

these mysterious symptoms. And once we could figure out

7:52

what they were, then like

7:55

you're saying that a lot

7:55

of things just kind of fell

7:57

into place and we didn't have

7:57

to keep looking under every

8:00

rock and behind every cloud. Yeah. It was. Okay, now we have a plan.

8:03

Now we know what it is. Now we can go with that plan

8:05

and so that really helps.

8:08

How old is Kennedy now? She is six and a half.

8:11

Cute. So tell us a little bit

8:13

about the condition itself.

8:16

How does it present itself? And I'm really hoping that

8:18

our conversation today will

8:21

turn some aha moments for

8:21

some moms and dads out there

8:25

who are also wondering what

8:25

they might be dealing with.

8:28

So if you could describe,

8:28

I'm sure there's a variety of

8:30

things, but in general what

8:30

Does it present itself as?

8:33

Yeah, of course. So for Kennedy, we found out

8:34

even, sooner than possibly

8:38

some families with this with

8:38

the genetic condition because

8:41

she had those seizures. So about a third of the

8:42

Dup15Q kids will experience

8:46

seizures and, experience

8:46

one or two their whole life.

8:49

And then some have, intractable

8:49

epilepsy, like Kennedy where,

8:53

it's it's scary, and it comes in

8:53

all different types of seizures,

8:57

not just pinpointed to one type. And then low muscle

8:59

tone, similar to down

9:02

syndrome, location on the

9:02

21 chromosome, they can

9:06

have some low muscle tone. And Kennedy definitely has the

9:07

low muscle tone, hypotonia,

9:11

and I knew that pretty soon.

9:13

I didn't know what to look for. I didn't know the

9:15

terminology, but I knew she

9:17

couldn't hold her head up. And I thought that was

9:18

always very strange.

9:20

She got diagnosed with torticollis, which is like, tight neck syndrome.

9:24

But again, why did she

9:24

have that torticollis?

9:27

Chances are it's because in

9:27

utero she had that low muscle

9:30

tone and couldn't move as much. So she got pretty squanched

9:31

in there and just couldn't

9:34

move like most babies. So the low tone does

9:36

cause problems even today.

9:39

That's why her gait is off. Her walking ability is very off.

9:43

She can walk. And sometimes she runs,

9:44

but she kind of bounds and

9:47

she scooches and, you know,

9:47

definitely her own way.

9:49

I remember going to a

9:49

physical development doctor.

9:52

And he looked, he took one

9:52

look at the way she walked

9:55

and he said, I've been

9:55

doing this for 30 years.

9:58

I haven't seen a kid walk like that. Like, we call it

10:00

our unicorn baby.

10:03

That tends to present

10:03

itself in most Dup15Q

10:06

kids and also autism. The majority of Dup15Q children

10:08

will get the autism diagnosis.

10:12

And autism diagnosis

10:12

is clinical.

10:14

So if you think about what

10:14

that term really means

10:17

that it can be subjective. There's no blood tests

10:19

for autism, right?

10:21

There's genetic components

10:21

that like do 15q syndrome,

10:24

they say, Oh, because of

10:24

this duplication on their

10:28

chromosome, it can lead to a

10:28

clinical diagnosis of autism.

10:31

But the typical autism

10:31

signs, Kennedy had them

10:34

from the beginning. So she got that diagnosis at

10:36

two, which a lot of the times

10:39

practitioners won't- they won't

10:39

even get the diagnosis until

10:43

they're a little older, but

10:43

based on what she was doing

10:46

and her genetic condition and

10:46

doing a little bit of research,

10:49

I brought all my research with

10:49

me, we got the diagnosis at 2.

10:53

It opened a lot of doors for therapies. That's the big thing

10:55

is, early intervention.

10:57

We got ABA therapy very

10:57

early on physical therapy,

11:01

occupational therapy, all

11:01

because of those low tone

11:04

diagnosis, autism diagnosis,

11:04

all of those clinical diagnoses

11:08

we got based on her condition,

11:11

And all I wanted was to just

11:11

get her help, get her healthy.

11:15

I was able to find an ABA

11:15

therapy center that could

11:18

really give her the constant

11:18

therapy she needed, I was

11:21

driving everywhere trying to

11:21

get her into these therapies

11:24

when really she needed an all

11:24

day intense intervention and

11:28

that came with the ABA therapy. Yes, we have a special needs

11:30

grandchild and we were able

11:32

to get that for her as well. It made a huge impact

11:34

on the changes that we

11:37

were able to see in her. Yeah. So did I hear you say

11:38

that 1 3rd have seizures?

11:42

So that means that 2 3rds don't.

11:45

Yes, and that statistic is

11:45

probably a little older again

11:49

with more genetic testing. For example, there

11:50

was a child that had a seizure at 16 years old.

11:53

He was a very high functioning

11:53

autistic, spoken, all of that.

11:58

But because he had that

11:58

one seizure, then the

12:01

doctors were like let's

12:01

do some genetic testing.

12:04

And sure enough, he had

12:04

DUP15Q, actually the same

12:07

type that Kennedy has which

12:07

is rare that he was so high

12:11

functioning and can communicate

12:11

because a lot are nonverbal.

12:14

But again, it goes back to the seizures. If your child with DUP15Q

12:16

struggles with seizures,

12:19

kind of from day one, like

12:19

Kennedy, they're going to have

12:22

more intellectual disability. You know, We went to the Dup15Q

12:23

conference recently in July,

12:27

and it was amazing to see

12:27

the wide variety of abilities

12:32

and it wasn't majority, about

12:32

half were not experiencing

12:36

seizures, which is so great. It is great, but it also means

12:38

that they may not even know that

12:41

they need to have the testing. That's what I was thinking was

12:43

that the seizures allowed you to

12:46

get the early intervention and

12:46

all that because you needed to

12:48

find your answers so quickly.

12:50

So a lot of moms and dads

12:50

may have questions about

12:53

what's going on and not

12:53

have those seizures to help

12:56

them find that information.

12:58

Exactly and I will say a lot

12:58

of the kids would get the

13:01

autism diagnosis 1st, and

13:01

then follow up with genetic

13:04

testing and realize that they

13:04

had this dup15q syndrome.

13:07

That's another good point is

13:07

that, genetic testing, it's

13:11

available, it should be all

13:11

the insurance companies should

13:14

provide it, especially if

13:14

you get an autism diagnosis

13:16

or low tone or, something

13:16

clinically that you do want

13:21

to, maybe not even try to

13:21

explain, just try to understand.

13:25

And you could also see

13:25

if there's something

13:27

hereditary in that genetic

13:27

diagnosis for future

13:31

planning, future children. Kennedy's syndrome was

13:32

completely de novo, which

13:35

means neither my husband

13:35

Jason or I were a carrier.

13:38

So it was just, it was very random. So can we talk about the link

13:41

between autism and DUP15Q?

13:45

it sounds like every Dup15Q

13:45

or the majority of them could

13:49

qualify for an autism diagnosis,

13:49

but it doesn't necessarily have

13:53

to go the other way around. Is that am I hearing

13:54

you correctly? Yeah, definitely.

13:56

I think autism is now diagnosed

13:56

more and explains a lot of

14:03

behavior issues with kids. What's interesting about

14:05

Dup15Q is: we don't really

14:09

fit in the box of autism. We get the diagnosis.

14:12

I truly think because of our

14:12

intellectual disability the

14:15

Dup15Q syndrome and community. A lot of our kids don't have

14:18

the behavior issues that

14:21

sometimes comes with autism,

14:21

or the social anxiety.

14:25

For example, but again,

14:25

I go back to, kids like

14:28

Kennedy that maybe struggled

14:28

with seizures and are more

14:30

intellectually challenged. She doesn't know to be

14:32

socially anxious, right?

14:34

She's just everybody. I will see her kind of shy away

14:36

if there's a huge crowd and

14:39

there's a lot of overstimulation

14:39

and that's very typical of, kids

14:43

that are diagnosed with autism. It's that overstimulation

14:44

that can just be overwhelming for them.

14:48

I definitely see that with

14:48

Kennedy and other Dup15Q kiddos.

14:52

And the sensory seeking,

14:52

that's what really got us

14:54

the diagnosis of autism. She constantly sensory seeks

14:56

and I mean that, that presents

15:00

itself so many different ways

15:00

but I would say the majority of

15:05

Dup15Q kiddos will stim in that

15:05

way, and that's why they're able

15:08

to get the autistic diagnosis. It sounds like the community

15:10

that you guys have is

15:13

growing and so supportive.

15:15

Can you describe some

15:15

of your volunteer work

15:17

that I mentioned earlier? Yeah, sure.

15:20

So the Dup15Q community reached

15:20

out to our law firm because they

15:25

knew that not only was I getting

15:25

into special needs planning

15:29

and helping draft special

15:29

needs trust through estate

15:31

plans for families in Texas

15:31

but they also knew about our

15:35

law firm because of my partner

15:35

in the firm, Gidget Tyler.

15:39

She has been helping people

15:39

get on social security

15:41

and disability benefits

15:41

for the past 14 years.

15:45

And she has a great success rate. She started in Oklahoma

15:46

and now she's in Texas.

15:49

And that's under federal law. So social security is

15:50

handled through federal law.

15:52

So she can give advice across

15:52

state lines because it's,

15:55

federally funded program.

15:58

And so they asked us if they

15:58

could do this help ticket.

16:02

The Dup15Q Alliance asked if

16:02

we could do a help ticket.

16:05

And that just meant, when a

16:05

family is needing information on

16:09

social security benefits, wants

16:09

to understand what a special

16:12

needs trust is, can they reach

16:12

out to you all through email

16:16

and Would you be able to respond

16:16

and give some advice or point

16:20

them in the right direction? And we said, absolutely,

16:21

let's do that. And so we started doing it and

16:23

then we just kept extending it.

16:26

And so we've done it for

16:26

the past two years and it

16:29

actually allowed Gidget and I

16:29

to learn, and at the Dup15Q

16:33

conference I was allowed

16:33

to also step in and have a

16:37

table where they could come

16:37

and do some Q and A with me.

16:39

So I love that. I loved helping families

16:40

kind of point them in the right direction.

16:43

They hadn't done any

16:43

type of estate planning

16:45

or legal planning and

16:45

they knew they needed to.

16:47

I mean, It's a big deal to get

16:47

people to make an estate plan.

16:51

The majority of us don't

16:51

get around to doing it.

16:53

What's the difference

16:53

between an estate plan,

16:55

a normal estate plan, and

16:55

then one for special needs.

16:59

I will say not a

16:59

huge difference.

17:02

Every estate planning

17:02

attorney should have a basic

17:05

understanding and knowledge

17:05

of a special needs trust.

17:08

It is something that could be as

17:08

simple as a contingent special

17:12

needs trust in the will where

17:12

just in case one of your loved

17:17

ones, one of your beneficiaries,

17:17

that you're leaving funds to

17:20

qualifies for any type of public

17:20

benefits at 18 or 19 or 30.

17:25

Instead of it going outright

17:25

to that beneficiary, put it in

17:29

what's called a special needs

17:29

trust so that we safeguard

17:32

that money, that inheritance. Those countable resource assets

17:34

when you're trying to qualify

17:38

for SSI, instead of it going

17:38

out right to that beneficiary,

17:41

it is safeguarded in this

17:41

special needs trust, and they

17:46

won't be kicked off of those

17:46

benefits, and they can continue

17:48

on how they've been living. I put language in all of

17:50

my wills as that just in

17:53

case as that backup plan. So that's the basic estate

17:55

plan is a will, power of

17:58

attorney, which are so

17:58

important to I could go

18:01

on and on about that one. That's when, there's

18:03

an accident, someone's

18:05

incapacitated and they need

18:05

access to that person's

18:07

bank account or get the

18:07

car out of the impound.

18:12

It's only in that person's name. That person is now

18:14

incapacitated or in surgery.

18:16

And that impound yard

18:16

is charging 200 a day.

18:20

Having that power of

18:20

attorney is gold to say, I

18:22

can sign on their behalf. They're obviously not

18:24

able to sign right now.

18:27

And they're able to

18:27

help in that way.

18:29

Same with medical power of attorney help make medical decisions.

18:33

That is the basic estate plan. It's wills.

18:36

For each spouse if they're

18:36

married and then the power

18:38

of attorneys and then a declaration of guardian, if you have minor children, you

18:40

do want to dictate who is the

18:43

best to raise your children. And so many clients of

18:45

mine say, Oh, my family

18:48

will just do what's best. I know they will. They'll figure it out.

18:50

We have seen identical twin

18:50

brothers get torn apart by a

18:55

$10000 estate and their families

18:55

completely torn apart because

18:59

nothing was, set in stone,

18:59

nothing was set in motion.

19:02

Nothing was planned ahead of time. So everyone thought, they

19:04

had a better idea of what's

19:07

best for the kids or what's

19:07

best for the parents.

19:09

If you have elderly parents. And then on the special needs

19:11

aspect, there are, relatives

19:14

of mine that I absolutely would

19:14

not put in place for Kennedy.

19:18

One, I don't think that

19:18

they would want that

19:20

type of job for her. I think that they might

19:22

step in and do what's best.

19:25

But I know who I would appoint

19:25

specifically that could handle

19:29

all of the issues that, that

19:29

come up medically with her.

19:32

And if something were to happen

19:32

when she was even adult, because

19:35

she will always need a guardian. She will qualify for

19:36

guardianship at 18. And I want to make sure that if

19:38

something happens to my husband

19:40

and I, that there are people

19:40

for the rest of her life that we

19:44

have designated to care for her. And you don't want any

19:46

argument, you know, the more

19:49

argument the more likely the

19:49

state's going to get involved.

19:52

And so that's why it's so

19:52

important for every client

19:54

to have this planning done. If you have kids, if you

19:56

have a home, a home is a huge

19:59

asset and you want to make

19:59

sure it's divided up evenly.

20:03

And then of course, if

20:03

you do have a child with

20:05

disabilities, like, my husband

20:05

and I do like Kennedy and

20:09

we know she will need care

20:09

for the rest of her life.

20:11

We know that at 18, she'll

20:11

qualify for SSI, 941 a month.

20:16

That helps, right? It helps for rent or, food.

20:19

And that's put in place

20:19

by Social Security and

20:23

federal government. But in Texas, $1 of SSI will

20:24

qualify you for Medicaid.

20:28

So that's what people really

20:28

need for their children or for

20:31

their adult disabled child is

20:31

the access to Medicaid that

20:35

supplemental medical insurance,

20:35

even if they have private

20:38

insurance, because there are

20:38

a lot of day programs and even

20:42

extended living programs right

20:42

when they reach a certain age

20:45

and they want to maybe have

20:45

some independent and live in

20:47

some type of group home or

20:47

something, whatever it may be..

20:51

Some of those facilities

20:51

only take Medicaid or have

20:54

to at least bill Medicaid

20:54

something before they can

20:57

then accept private insurance. So that is why it's important,

20:59

even if you've saved beautifully

21:02

and you think, oh we have, a

21:02

million dollar life insurance

21:04

policy that'll cover our child

21:04

for the rest of their life.

21:07

It may not, you really

21:07

want to safeguard that

21:10

amount of money, put it

21:10

into a special needs trust.

21:13

And then let that child

21:13

still qualify for the

21:16

benefits that they deserve

21:16

and that can help them for

21:19

the majority of their life. So when you put it into

21:21

trust, it's not in their

21:23

name, but they can get the coverage that they need

21:25

from that and so the fact that

21:27

it's set aside in the entities

21:27

name and the trust name.

21:31

Correct. That's a good question because

21:31

I know it can get very confusing

21:34

on even what a trust is majority

21:34

of my clients will set up

21:38

what's called a standalone third

21:38

party supplemental needs trust.

21:42

Also known as a special

21:42

needs trust those terms

21:45

go hand in hand a lot. Third party means someone

21:46

other than the beneficiary is

21:49

setting it up so someone other

21:49

than the disabled beneficiary

21:52

has created this trust. It's in their name, so

21:53

to speak, for the benefit

21:56

of the disabled child. Majority of my clients will

21:58

set it up as revocable, meaning

22:02

they can revoke it at any time. So, If anything were to happen

22:04

to that child, or they get

22:06

better and their disability

22:06

will not, qualify them

22:09

enough for benefits at 18. And they feel like they

22:11

don't need the supplemental needs trust anymore.

22:14

They can revoke it or they

22:14

can amend it up to a certain

22:17

time period, which is

22:17

usually upon their passing.

22:20

Upon the parents passing,

22:20

it does become irrevocable.

22:23

And then in that trust

22:23

agreement, they have set

22:26

up the trustees, either

22:26

a corporate trustee, some

22:30

financial institution that

22:30

understands supplemental needs

22:32

trust, or a family member

22:32

that they have appointed to.

22:36

And a trustee, that just means

22:36

a fiduciary responsibility

22:39

to manage those funds for the

22:39

benefit of that disabled child

22:43

that disabled beneficiary. And trustee management

22:45

can get difficult.

22:48

But the trustee can hire professionals. They can hire attorneys to help

22:50

them understand it or to help

22:53

them submit the right things. We always say, you might want

22:54

to talk with a CPA as well-

22:57

you want to understand from

22:57

the tax issues involved with

23:00

the special needs trust. It's actually usually named

23:01

the beneficiary's name.

23:05

Kennedy Maderer's Supplemental Needs Trust is the name of the trust.

23:08

You start titling assets in

23:08

the name of that trust, but

23:11

the trustee is the person

23:11

that holds on to those funds.

23:14

So in my example of the

23:14

revocable trust, it is

23:17

still under the parent

23:17

social security number.

23:20

That's tax ID. It's not a full separate

23:21

taxable entity yet.

23:24

and again, it's revocable

23:24

until their passing and then

23:28

it is right on, like you said,

23:28

a separate taxable entity.

23:32

And, even until that time,

23:32

Social Security, they're

23:36

going to consider it a

23:36

non countable resource.

23:39

That's what we're really trying

23:39

to accomplish is that Social

23:42

Security does not count all of

23:42

these funds over here in the

23:45

name of the trust as a countable

23:45

resource to the beneficiary.

23:49

It's going to supplement

23:49

that beneficiary's

23:51

life, not supplant. Because it is Medicaid

23:53

and SSI is income based.

23:56

You have to be, essentially

23:56

poor, you have to be a very

24:00

low level income qualified. It's such a different world.

24:04

Just from my personal experience

24:04

when my husband and I were

24:08

working with an attorney

24:08

and putting our estate plan

24:10

together, we talked about our

24:10

grandchild and the special

24:14

needs and, would we want to set

24:14

aside specific funds for her?

24:18

And the attorney said, not

24:18

a good idea because it could

24:22

disqualify for her from

24:22

receiving some of these

24:25

benefits that we talked about. Our hearts were in the

24:27

right place, but we could

24:29

have really messed things

24:29

up for her by trying to be

24:33

thoughtful and not knowing.

24:35

So thankfully we spoke up to

24:35

someone who knew what she was

24:39

talking about instead of, you

24:39

know, another family member that

24:41

might say that sounds great,

24:41

and cheer us on, but really

24:45

speaking to a professional

24:45

who knows what they're talking

24:47

about could be critical

24:47

in a situation like this.

24:51

Obviously we talk about

24:51

the directives and all of

24:53

that and why you need those

24:53

things, but you're the first

24:56

person that I've heard that

24:56

has these, the special needs

25:00

provision in the actual, what

25:00

you call a basic estate plan.

25:05

You're the first person

25:05

I've heard that has said it.

25:07

And and I think it's

25:07

brilliant because it's not

25:09

just genetic issues that are

25:09

create the special needs.

25:12

Can you describe the

25:12

process of going into this?

25:17

Majority of my clients have

25:17

come to me because they know

25:21

through my network and just

25:21

being a special needs parent,

25:24

they know what I do already

25:24

and they've heard that they

25:27

need a special needs attorney. They've heard that going

25:28

to, an attorney that doesn't

25:31

have experience in this

25:31

area will likely kind of

25:35

steer them wrong as you've

25:35

experienced or may, not even

25:38

it will right just may not

25:38

understand all of the nuances,

25:41

especially at Social Security

25:41

and Medicaid eligibility.

25:44

Our intake form has a place that

25:44

says, do you have, anyone in

25:49

your family or any beneficiary

25:49

that you're naming in this

25:51

intake form, will they or are

25:51

they receiving public benefits?

25:55

Do they have a disability? If they check that at all, or

25:57

if they even say, I need more

26:00

information about this, then

26:00

we go into kind of the special

26:02

needs planning discussion. So that's a big thing, too.

26:06

Also, what's nice is we have

26:06

that extra kind of backup of

26:10

here's how you qualify for SSI

26:10

when your child reaches 18.

26:14

So I will say the majority

26:14

of my clients, they come

26:17

to me, they send me an

26:17

email, facebook messages.

26:20

We have a, an inquiry

26:20

on our website....

26:22

phone calls. And really they can come

26:23

to me or Steven or Gidget.

26:27

All three of us know

26:27

special needs planning.

26:31

But I'm the go-to on it, right? So I try to reach out to

26:33

them personally through

26:35

email or phone call. A lot of these inquiries

26:36

will come in and I say, at

26:40

first, what's a good number

26:40

for me to call you and, talk

26:43

with them for 15 minutes. I know I pretty much know

26:44

exactly what they need. And that's when we set

26:46

them up as a client.

26:48

I get more information through

26:48

an intake form, but I say,

26:51

the best thing to do

26:51

is let's schedule an hour and

26:55

a half to two hour meeting,

26:55

and we will go over this

26:57

intake form in more detail.

27:00

I would never start drafting

27:00

anything until I truly

27:03

understand the family and their

27:03

child with disabilities or their

27:08

adult child with disabilities. I've had a family come and

27:09

their child was able to work.

27:12

He had cerebral palsy. And it had some intellectual

27:14

disability that came with it.

27:17

But he, for the most part, he

27:17

was able to work at a grocery

27:21

store for the majority of his

27:21

life and made decent money.

27:24

And then now is able to

27:24

qualify for SSDI because

27:27

he's paid into the system. But if something were to

27:29

happen to his mother or his

27:32

father, which they are getting

27:32

older, he needs someone to

27:35

help manage these funds. And I know one of these

27:37

questions I get a lot is

27:40

what's a unique, estate plan? That was pretty unique because

27:41

the parents really didn't

27:44

have anyone in their life

27:44

that could truly help if they

27:47

were gone, it could truly help

27:47

him with financial matters.

27:51

He was intellectually not able

27:51

to even understand how to manage

27:55

the bank account and write

27:55

checks and things like that.

27:58

And unfortunately, there

27:58

was a family member that may

28:01

have taken advantage of him. So we needed to really

28:03

put in safeguards where

28:06

we appointed a trustee. I say corporate trustee, people

28:09

hate that word, but honestly,

28:12

there are great financial

28:12

institutions out there and trust

28:15

departments out there and trust

28:15

companies out there that their

28:18

whole goal is to help these

28:18

people with disabilities, these

28:21

adult disabled beneficiaries

28:21

through the special needs trust.

28:25

We did we got in touch with

28:25

a great trust company and

28:29

that's who we put into place. And we talked about who could

28:30

be a caregiver who could go

28:33

and check on him at certain

28:33

stages of his life and we

28:36

walked through, where he would

28:36

live and that's what I love.

28:39

I love really

28:39

understanding the family.

28:41

And because of all of that. But just things that

28:43

could have gone wrong with

28:45

that particular family. It was like a

28:47

three hour meeting. It was pretty emotionally

28:48

exhausting at the end of it.

28:51

But once it was all signed and

28:51

we had a plan, the parents were

28:55

in tears, they were so grateful.

28:58

I mean, These are parents that

28:58

are in their eighties, right?

29:00

And their son is 60 something

29:00

and they're just, I hope, I

29:04

hope he's taken care of when

29:04

something happens to us.

29:06

So there is no right or

29:06

wrong time to start planning.

29:10

Definitely earlier, the better. But every 10 years, your life

29:12

could drastically change.

29:15

Mine did. I never knew I needed

29:15

a supplemental needs language in my will.

29:18

And I always say, don't let

29:18

any family member disinherit...

29:22

that's not where we want to go. That's why the government

29:24

allows us to set up these

29:27

special needs trusts because

29:27

we do want to help these

29:29

disabled beneficiaries. We need to.

29:32

They need extra money. SSI check and Medicaid does not

29:34

cover even a quarter of what

29:39

they need to survive, right? They need extra funds, but

29:41

those extra funds cannot

29:44

also count them against being

29:44

able to qualify for Medicaid.

29:47

So we are very

29:47

passionate about it.

29:49

And it's just a right that

29:49

kids like Kennedy should have.

29:53

It's not her fault that she

29:53

was born with a disability.

29:55

That's right. That's right. Yeah. And you bring up a

29:57

good point to that.

29:59

This is you're not finding a

29:59

loophole and taking advantage

30:02

of something that ... it

30:02

is there for a reason.

30:05

And And it's not it's not

30:05

anything shady, like it's all

30:08

up and up in what you're doing. Yeah, I think public benefits

30:10

sometimes get a bad rap.

30:13

You're right. Food stamps and things like that. People taking advantage and

30:15

there's of course going to

30:17

be bad actors out there. There's of course going

30:18

to be people that take advantage of a system.

30:21

Gidget, I feel like, is great

30:21

at understanding what true

30:26

disability, that word, that

30:26

actual legal word to qualify

30:30

for Social Security means. It means you can't work.

30:33

If she knows that you've been

30:33

working, or that you can work,

30:36

and your disability won't

30:36

qualify you, she will be honest

30:39

and say, you will not qualify. You need to go work.

30:42

You need to go do what you

30:42

can with your limitations.

30:46

We're not against working, right? It's these extreme conditions

30:48

that truly qualify you

30:51

because of your disability. Love that so much.

30:55

What is the hardest

30:55

part of making a plan?

30:59

Honestly, what I hear the most is, I

31:00

don't know who to appoint.

31:04

It's the designation.

31:06

my parents are getting

31:06

older, I don't think that they

31:09

could handle this situation. My sister or my brother live,

31:11

out of the country or even

31:14

out of the state, they're not going to move here. It's that and I feel for them.

31:18

There was this family that

31:18

were able to, put in, I

31:22

think they had 10 alternates

31:22

and I got teared up.

31:25

I started crying. I said. This is amazing, like

31:27

what you've done.

31:29

You're the community that

31:29

has surrounded you based on

31:32

this child that has extreme

31:32

disabilities, but you have a

31:36

huge support system that is so

31:36

great and sometimes very hard

31:41

to find because unfortunately,

31:41

when you have a child with

31:45

extreme special needs. You can feel very isolated

31:47

and you are sometimes,

31:51

not invited places, right? Because they don't know how

31:53

your kid's going to act. And so you, you tend to

31:55

just naturally kind of pull

31:59

back from social situations.

32:01

And I encourage all

32:01

of my clients to start

32:04

networking, start getting

32:04

that community around them.

32:07

Whether it's through your

32:07

church or like Steel Magnolia

32:09

Moms, a great organization

32:09

that truly helps moms with

32:13

kids with disabilities. And they're trying to get a dad

32:14

program out there too, or any

32:18

type of guardian, of someone

32:18

with extreme disabilities so

32:21

that they don't feel isolated. They don't feel alone.

32:23

And that's a huge reason the

32:23

Dup15Q Alliance has grown

32:27

is because these families,

32:27

they need somewhere to turn.

32:29

They need somewhere to go

32:29

to not feel so alone and to

32:33

have people that they can

32:33

use as a backup, use as a

32:36

designation for a trustee. For a guardian, for a caregiver

32:38

. Even the families that might

32:42

have a lot of them they'll

32:42

appoint a trust company

32:45

which I do encourage because

32:45

trust companies are great.

32:47

They know how to manage these funds. They know what to file

32:49

with social security.

32:51

They just know they get it. And it's not as overwhelming

32:52

as if, just some lay person

32:56

who didn't know what it

32:56

even means to be a trustee

32:59

was named in this way. And then they're

33:01

like what do I do? And they're a little nervous.

33:03

So that's the hardest part

33:03

is just trying to figure

33:06

out who is the best person.

33:08

That's what you're

33:08

not going to get from

33:11

Google or a form online.

33:13

you know, The title of the

33:13

podcast is the probate podcast,

33:16

but this is really setting

33:16

this person up and for people

33:20

in making their estate plan

33:20

helping them, helping those

33:25

that come after them when they

33:25

do pass away to be taken care

33:29

of and to settle the estate. Absolutely.

33:32

That's a very good point. When we draft a special needs

33:33

trust for a disabled beneficiary

33:35

and it's a standalone, What's important with

33:39

that third party stand alone special needs trust.

33:42

The reason I call it stand alone

33:42

is it's we're trying to fund

33:44

it now, whether that's just

33:44

opening up a savings account

33:47

and funding it minimally

33:47

throughout the parents lifetime.

33:51

It's because it's so much easier

33:51

for beneficiary designation

33:54

cards with, certain accounts. Like IRAs and life insurance

33:56

policies to actually point

34:00

those, assets that fall

34:00

outside of probate, right?

34:03

So those type of investment

34:03

accounts and life insurance

34:05

policies will point directly to

34:05

that special needs trust, and

34:08

it's immediate money, right? But then on the other side, if

34:10

you do have assets that fall

34:13

into your name, within the will

34:13

both parents will, grandparents

34:17

will, it's also very easy to

34:17

name that standalone third party

34:22

special needs trust instead

34:22

of that beneficiary outright.

34:26

So you don't feel like

34:26

you're disinheriting a

34:28

grandchild or a child. You're just naming

34:30

it different, right? You're putting a different name.

34:34

It's her special needs trust

34:34

for the benefit of that

34:37

child or grandchild instead

34:37

of just her name outright.

34:40

So the will can still cover

34:40

that and that way she's not, or

34:45

he's not inheriting funds that

34:45

could kick her off disability.

34:48

It's going straight into her trust. So that's why that special

34:50

needs trust is so important.

34:53

But then parents say then

34:53

that's all I need is I just

34:55

need the trust agreement. No, you still need the will,

34:56

you know, the, the will still

34:59

has to tie into that trust.

35:02

And a lot of special needs

35:02

planners out there, they

35:04

also lose sleep at night. And so do I about beneficiary

35:05

designation cards, titling it

35:09

correctly is so important too.

35:11

So I always tell my clients,

35:11

when you go to update your

35:14

beneficiary designation

35:14

cards, reach back out to me.

35:17

If you don't understand the

35:17

language, I do a certificate

35:20

of trust for them and show them how to title it. But, if for some reason, that

35:22

financial institution isn't

35:25

understanding how to title

35:25

it, come back to me, ask me,

35:28

don't let them change it. I need to review it so that

35:30

it is properly, designated.

35:34

So I would offer that

35:34

extra step as well.

35:37

So important, so I'm glad

35:37

you're doing what you're doing.

35:40

And I'm over here trying

35:40

to do what I'm doing.

35:42

And I'm talking as fast as I

35:42

can to as many people as I can.

35:45

And the platform is helping

35:45

me to amplify my message to

35:49

get your plans together, find

35:49

the right person, don't use

35:52

the online form to do that.

35:55

It's so important

35:55

that your specific

35:57

situation is worked out. Someone who really knows

35:58

what they talk about. Yes, absolutely.

36:02

Sherri we hear a lot from

36:02

clients I am here because I

36:05

never want that to happen again. I don't want it to happen

36:06

to my kids, so you hit

36:09

the nail on the head. It's so important. So if you have, and I hope you

36:10

do have a soon to be client

36:13

that's listening right now... What are some things that she

36:15

or he might need to have in mind

36:19

before they reach out to you? A lot of the times people

36:21

think that they have to have

36:23

all of their assets in a

36:23

very beautiful spreadsheet

36:26

and listed and account

36:26

number perfect and all that.

36:29

Don't worry about any of that. Come to me first.

36:31

We will go over your assets. Absolutely.

36:34

But I don't need the nitty

36:34

gritty detail to just have that

36:37

first appointment with you. There are certain accounts

36:38

and certain assets that

36:41

I will have to dig deeper

36:41

into once that comes out.

36:44

But still a good idea to have

36:44

a ballpark understanding of

36:48

your estate value, ballpark

36:48

understanding of where all of

36:51

your accounts are, and also

36:51

some designations in mind,

36:56

I will help you go through

36:56

all of those designations but

36:58

start talking to people now.

37:01

It's a hard conversation. But, I do have some clients

37:03

coming to me and saying, why

37:05

is anything on the intake form, because I don't know.. Like, okay, and then when

37:08

they hear about what all

37:11

entails, maybe because they

37:11

don't understand truly what

37:14

a trustee is or guardian. Or power of attorney, and then

37:16

after I explain it, they say.

37:19

Oh, I definitely have

37:19

to talk to those people.

37:21

Yes. You know... you probably should. You don't want to

37:23

surprise anybody in your

37:25

will or in your trust. You kind of want to prepare

37:27

them a little bit first.

37:29

Yes. So that's what I would

37:30

encourage people to do is

37:32

just open communication. I have to say that over

37:34

and over to myself, too. And also people's lives

37:35

change constantly, right?

37:39

Divorce happens, death

37:39

happens, accidents happen.

37:43

So every few years, if some big

37:43

life event has happened, go back

37:48

and look at your estate plan. You don't want someone named

37:49

as a guardian in there.

37:53

That may now have a drinking problem. You want to get that

37:54

name completely.

37:57

And a lot of people think

37:57

it's rude to say, who you

38:00

don't want as a guardian. No, it's not rude.

38:03

It's important. I put it who you don't

38:05

want as a guardian as well.

38:08

And I'm probably not in

38:08

the majority there for

38:11

attorneys, but you want it

38:11

as clear as mud, so they say.

38:16

Yes. Yeah, what is the question

38:16

that you wish people

38:19

would ask more often? As far as for a state plans.

38:23

Like, why do I need a will?

38:26

I don't have very many assets. Why do I need a will?

38:29

Why can't I just write something

38:29

down on a piece of paper?

38:32

I like those questions. I'll be, I'll tell you why.

38:34

And here's an example. And I give a real life

38:35

example of why that didn't

38:38

work or how that didn't work

38:38

and all of the problems that

38:42

trickled down after the fact. So just wish people would

38:44

actually listen to someone

38:49

in this industry and

38:49

not someone on TikTok.

38:54

Because I will say we have

38:54

seen even professionals,

38:58

financial advisors, CPAs.

39:00

Trust companies. I've actually had a

39:01

trust company send me a trust that was wrong.

39:05

It would have had a lot of complications if I didn't correct it.

39:08

So not saying that I've never

39:08

made a mistake, but you

39:11

have to go back and really

39:11

look at that trust agreement.

39:15

So I think it's, it's kind

39:15

of the thought of well,

39:18

that won't happen to me,

39:18

or do I really need this?

39:21

Or, won't it just all work out? So I do wish people

39:23

would kind of just start

39:25

openly talking about it. I know sometimes it's a taboo

39:26

subject to talk about death.

39:30

But we're all gonna die, right? And having an estate plan

39:31

is not really for you.

39:35

It's for your loved one. And getting people to

39:37

start talking about that

39:40

and asking more questions

39:40

about what happens when

39:43

I die that's important. I think, a little tiny silver

39:44

lining of COVID is a lot of

39:47

people started asking questions

39:47

and a lot of people started

39:50

really thinking about "wow. I just had someone pass

39:52

away from a disease that

39:55

we knew nothing about." Like, whoa, that, huge

39:55

thing that happened in our

39:58

world and our community. And so I would, just

39:59

encourage, I guess that's

40:02

that to answer your question. And that's what I would like

40:03

people to talk about more and

40:06

to ask questions more of, to

40:06

attorneys that truly want to

40:10

help and know and understand

40:10

what they're going through

40:12

For sure. The thing that I would add

40:13

to that is then to talk

40:16

to your family about it. I read a book called the

40:18

Willing Wisdom and he talks

40:22

about having a family meeting. I'd love to have him on

40:23

the podcast one day.. But so you make your

40:25

designations and you have your

40:28

directives and all of that. And then you talk to your

40:30

family, like on a yearly basis.

40:34

So in our family we're doing

40:34

it every January and then the

40:38

kids at first, it was awkward. We have adult kids.

40:40

It was awkward and I was

40:40

nervous because I didn't even

40:43

want to have a will, but I

40:43

eventually came around...

40:46

But we weren't even halfway

40:46

through and my oldest daughter

40:49

said thank you so much for

40:49

calling this meeting because

40:53

they're hearing why we made

40:53

these designations and why we

40:57

want these, why we're requesting

40:57

these certain things are

40:59

not wanting certain things. And It's not about this

41:01

person making a difficult

41:04

decision on her own free will.

41:06

So everybody's on the same page. And it was a hard

41:09

conversation, but I'm looking

41:11

forward to the next 1. we had our 1st, 1 in January.

41:14

We'll have our next

41:14

1 in January again.

41:17

And they were like, you know what, we need to be thinking about having a

41:19

will, so even though they're

41:22

in their 30s it's something

41:22

it's not too early for them.

41:25

Yeah, so I ..

41:27

Love that! I'm going to use that. I, I tend to when I have

41:28

family where I know there's

41:32

already some or a little bit

41:32

of discord or a little bit of

41:36

competition between siblings,

41:36

because I'm hearing the parents

41:39

talk about it and things. Thank you. I say, the best thing to do is

41:40

talk to them about why you're

41:45

designating who for what, right?

41:47

We can put a no contest

41:47

clause all day long in these

41:50

wills, but still people can

41:50

get their feelings hurt.

41:54

And when they get their feelings hurt, they lash out. And then you could delay

41:56

probate forever and it could

42:00

just become complicated. But if you have now when

42:01

you're alive and you have

42:04

other people's input. It might really help.

42:07

I actually have that similar

42:07

scenario happen where all the

42:11

kids wanted to be involved with

42:11

the mother's planning and they

42:14

all want to be on the phone. And it was very difficult

42:15

to kind of get a little firm

42:18

with them and say, look,

42:18

I only have 1 client here.

42:20

True. And I'm gonna speak with her only. Yeah. And then in whatever she talks

42:22

with her family members after

42:25

that is, is of course up to her.

42:28

But you can't have outside influences. So it's so important to

42:30

all be on the same page.

42:33

I love that.

42:33

family meeting every year,

42:36

especially with kiddos that

42:36

have disabilities, that,

42:39

that's even more important. And I was thinking for the

42:40

trustee too, for them to

42:43

know why you're thinking

42:43

this way or that way.

42:46

And yeah wow, we

42:46

have covered a lot.

42:50

It has been so helpful. I just love this part of

42:52

my job because I get to

42:55

learn from people like you

42:55

and get to help point other

42:58

people in your direction. When I, I'm always

43:00

listening for how I can help someone and Thank you.

43:03

And, really careful about

43:03

who I recommend them to.

43:06

So, Carly, it's honestly

43:06

a privilege to have

43:09

you on the show today. And I so appreciate you taking

43:11

the time out of your very

43:13

busy schedule to be here and

43:13

to help people that will be

43:16

listening and doing those

43:16

midnight searches on what to

43:19

do, because they're stressed

43:19

out and don't know where to go.

43:22

So I really hope that you

43:22

get some calls from this.

43:26

Thank you for being here. Yes. Thank you so much, Sherri.

43:28

The only thing I would

43:28

add is, just for peace of

43:31

mind for your listeners. If you didn't have a plan, or

43:33

if there's not a plan in place.

43:36

We can still help. There are safeguards

43:37

that we can do. It's not the best case

43:39

scenario, but it is something...

43:42

there's first party trusts. I just wanted to add that

43:44

because we didn't get to it. Oh, good. Good.

43:46

But we can create first

43:46

party trusts and still

43:49

protect those funds and get

43:49

them back on the benefit.

43:52

And Gidgets very good at that. Just know that we kind of

43:53

called the oops, the oops

43:55

trust, but there are ways to

43:55

rectify something that, wasn't

44:00

thought out and planned. We're here to help if anyone

44:01

is in that situation as well.

44:04

I'm so glad you brought that up. Thank you for doing that.

44:06

Yeah. So that's it for today's show.

44:09

I told you it was going

44:09

to be loads and loads

44:12

of information for you. Reach out to Carly and Gidget

44:13

and Stephen if you have any

44:16

questions at Tyler and Maderer. How can people find you, Carly?

44:20

Yes, of course. Our website www.tylermaderer.Com.

44:24

That you can do an inquiry

44:24

through our website.

44:26

My email, Carly,

44:26

[email protected].

44:32

com. I love email, I

44:32

respond pretty quick.

44:35

And then our, and

44:35

then call our office.

44:38

We have a great team

44:38

that is ready to help.

44:41

Good deal. All of that will be in the show

44:42

notes as well, so you'll be able

44:45

to just get the links on that. So that's it for today, Carly,

44:47

again, thank you so much,

44:50

and we will see you next

44:50

time on the Probate Podcast.