0:00

I was thinking disability is the

0:02

worst thing that could happen to

0:04

my child and to my family

0:06

. Part of the reason I thought that everybody

0:09

, including doctors . I am so

0:11

sorry , oh my gosh , I don't know how you're

0:13

gonna do this Everyone was telling

0:15

me how to feel and it was all terrible

0:17

. I now know the disability

0:20

itself is quite often

0:22

and generally not the worst

0:24

thing and not even terrible a lot

0:27

of times . But the barriers

0:29

in society and access to

0:31

medical services , social services , supports

0:33

can make it really awful , and

0:36

I wish someone along

0:38

the way had said disability is

0:40

not a tragedy , there are resources

0:43

to help you . My journey would have been very

0:45

different because in the beginning I was a wreck .

0:47

Folks , your exciting new medical

0:50

career it's just been hit with

0:52

a serious illness or injury that

0:54

stops you from earning a paycheck just when

0:56

you need it most . Check

0:58

out what Jamie Fleischer of SEPFA Life

1:00

Insurance said back on episode 176

1:03

about having disability insurance

1:05

early in your career .

1:07

The real reason to get it early on is

1:09

really twofold . One is to protect

1:12

your insurability . So if you are healthy and you

1:14

can obtain the coverage , you also pre-approve

1:16

yourself to be able to buy more in the

1:18

future . So down the road , as your income

1:20

does increase , you don't have to answer

1:23

additional medical questions . All you have to do is show

1:25

that your income has increased and you can buy

1:27

more benefits at that time . No medical

1:29

questions asked .

1:31

Protect your income , secure your future

1:33

. Check out SEPFALifeInsurancecom

1:37

. All

1:39

right , what's good everyone . This is Dr Ney , I'm joined by

1:41

Dr Renee . Hey , this

1:43

is gonna be a little bit of a different episode , as the

1:45

term always , or the term that's out there that

1:47

says everybody has a plan until you get punched in

1:49

the face . Everybody always

1:52

has a plan in their mind . They think that life

1:54

is gonna go perfectly , but a lot

1:56

of times that's just not the way how it goes

1:58

, particularly with our children

2:00

. We have a plan in our head and

2:03

our plan is not always necessarily what's going

2:05

to actually play out . So we have an amazing

2:07

guest here for you guys . Today we're gonna

2:09

talk about what happens if you have a disability

2:12

in your family , particularly with your children

2:14

, and how to navigate that , not only from

2:16

a healthcare standpoint , but also from a financial

2:18

standpoint . So we have Kelly

2:20

Coleman , who is here to talk to us about

2:22

all of that . She's the author of the book Everything

2:25

no One Tells you About Parenting A

2:27

Disabled Child your

2:29

guide to the essential systems , services

2:31

and supports . Okay , so

2:33

this is a handbook that we're gonna discuss , but also

2:35

, more importantly , we're gonna talk more about Kelly's background

2:38

and how she's supporting her children . So , kelly

2:40

, welcome to Docs Outside the Box , how you doing .

2:43

Thank you guys . I am great . This

2:45

session with you guys is the highlight

2:48

of my week . I love your podcast

2:50

as a person who is not a doctor

2:53

and not a medical student , but

2:55

the fact that you guys are bringing

2:57

humor and reality

3:00

to discussions of money

3:02

and to finance of like we

3:04

can let the air out of the balloon and

3:06

not freak out about these things , but

3:09

actually discuss them as real

3:11

humans , which I love .

3:13

Yeah , doctors are real humans .

3:15

Amazing . I

3:17

think what we're realizing is that the

3:20

more you demystify all of those conversations

3:22

like money and you are

3:25

really real with it , like how is it that two docs

3:27

are struggling with their finances or

3:29

why is it that we

3:31

decide to make certain decisions with our lifestyle

3:34

the more you demystify that

3:36

. I think you make it easier for the generation behind

3:38

you that's coming to say , hmm , I

3:40

don't necessarily have to follow the traditional path . I

3:43

can follow maybe this path or just trailblaze

3:45

my own and know that I'm just gonna be okay

3:48

, right . So that's why we're

3:50

here is to kind of make it easier for

3:52

other people who are interested , maybe

3:55

, in this type of lifestyle or maybe interested

3:57

in well , I come from a different

4:00

background and maybe medicine is just

4:02

not giving me everything I need . I need to do something different

4:04

. We listen to those guys . So that's

4:06

why we're here .

4:08

Yeah , and we really wanted to invite

4:10

you to the show , because one of the things

4:12

that we often talk about

4:14

with our careers is

4:16

finances , obviously , but

4:18

not in the realm of what

4:21

if the plan just doesn't pan

4:23

out . And I think that's

4:25

really important , because I don't think that when

4:27

anyone thinks about having children

4:29

, that they think that they're ever going

4:31

to have a child with a disability . So

4:35

what was that like for you ? Was it

4:37

something that you found out prenatally ? Was it

4:39

something that you found out afterwards ?

4:42

So I have two amazing kiddos

4:45

. Right now they are 12

4:47

and 10, . Our older son is in

4:49

middle school and in a rock band

4:51

and makes art and plays the tuba and

4:53

is on his unique path . Our

4:56

younger one is on an even more unique path

4:58

. He's 10 years old

5:00

and , in addition to

5:02

loving airplanes and swimming

5:05

and playing the same song over and over all day long

5:07

, he has multiple

5:09

disabilities , and for him that

5:11

includes a yet undiagnosed genetic

5:14

disorder Syndrome . We've

5:16

done literally every test science has

5:18

available up through full genome

5:20

sequencing , and now I know

5:22

a lot about genetics . Who

5:25

knew , right , right ? right , so

5:27

you know genetics , neurology , gastroenterology

5:30

, neuro-gastroenterology , neuro-ophthalmology

5:32

, like you name it .

5:33

I'm like I'm like , Sounds like , you're doing a fellowship

5:35

. That's what we call

5:37

it fellowship and training .

5:39

You know what it's like , I know the jargon and

5:42

I drink a lot of coffee . So my sister

5:44

tells me . My sister who is a doctor

5:46

tells me that doesn't mean I'm a doctor , but sometimes

5:48

I'm like , are you sure ?

5:49

You're close . You're very close . You need the loans

5:51

also . Complete the circle . If you had

5:53

the loans to complete your circle , yes

5:55

. I believe you more , I think you've talked to my sister

5:58

?

5:58

Yes , she says that same thing . So

6:01

you know , within his undiagnosed

6:04

genetic syndrome , for him that

6:06

presents as cerebral

6:08

palsy , autism , cortical vision impairment

6:10

, epilepsy , feeding tubes

6:13

, sensory processing , auditory

6:15

processing , fine motor , gross motor

6:17

, and when I

6:19

love that you guys are doctors who are

6:21

like , yeah , okay , that's information and you're

6:23

not going . Oh you poor thing

6:26

, because disability

6:28

isn't something that should warrant

6:30

that . Oh you poor thing , it's

6:33

just information . And

6:35

for our son , he is happy

6:38

, he is healthy , he loves school , he

6:40

is mobile . So that's part

6:42

of his presentation , is he ?

6:44

is walking .

6:45

He communicates not with sentences

6:47

, but with some signs and some gestures

6:49

and with alternative

6:52

communication , which for him is an iPad

6:54

with a talking program , right , and

6:57

so he's got a lot of

6:59

great stuff going on . As

7:01

a parent , I was trying

7:03

not to laugh out loud when you said getting punched

7:05

in the face . I'm like , yeah , that's it , and

7:09

I think so many of us think we

7:11

reach a point of adulthood when we're like I

7:13

got this figured out , like I'm not gonna get

7:15

punched in the face . You will

7:17

get punched in the face whether it's through

7:19

parenting or life or career

7:22

or finances . Certainly it's

7:24

coming for you . So for

7:26

us , we had no

7:28

signs prenatally that anything

7:31

was going on out of the ordinary

7:33

. Our pregnancy was exactly

7:35

, pretty much identical to our prior pregnancy

7:38

, so we were just like going about life

7:40

, it's all good . And when

7:42

our son Aaron was born , there

7:45

was the just mom red

7:48

light in the head saying something's going on

7:50

and I just knew

7:52

from day one , and the nurses like

7:54

, oh , you're just hormonal and tired , have some ice

7:56

chips . And I'm like , eh , there's

7:59

something going on . And he passed the

8:01

tests . The

8:03

very first sign that there was something

8:05

going on was that he had

8:07

ridges along his skull , that

8:10

it was presumed to be craniosynostosis

8:13

which I'm

8:15

sure your listeners know , but for those who don't

8:17

, is when the plates of the skull fuse

8:19

prematurely in babies

8:22

I believe it's only babies and and so

8:24

we were horrified at the idea that he

8:26

would have to have surgery about

8:29

one year old to separate the

8:31

plates of the skull and , you

8:34

know , eventually his hair would grow over it and he

8:36

goes about life . It turns

8:39

out that might have been an easier path for us . He

8:42

did not have craniosynostosis . His

8:44

brain size , we learned from an MRI

8:47

, was within

8:49

the range of normal , was the description from

8:51

Several neuro radiologists

8:54

who read that , but within

8:56

the low range of normal . So his brain was

8:58

not growing fast enough to separate the plates

9:01

in the skull , and so

9:03

of course that's a sign that there might be something

9:05

going on . And we

9:08

accumulated diagnoses for a long

9:10

time and to get to the list where

9:12

we are today and For

9:15

us , we had pretty much no

9:18

knowledge , no experience of

9:21

what this journey would be and

9:23

, as you know , starting out anything from

9:26

a place of ignorance Is a really

9:28

hard place really yeah , it's a really hard

9:30

place to start , yeah . I'm sure .

9:32

I'm sure so tell

9:35

me Okay , you

9:37

Went throughout your pregnancy

9:40

, thought it was completely

9:42

Normal , you had an older son

9:44

, no issues , and

9:46

all of a sudden you deliver , you

9:49

kind of notice something's going on and then all

9:51

it sounds like All of a sudden

9:53

, all of these tests started happening

9:56

right . What's

9:58

your thought process at that point

10:00

in terms of Kind

10:03

of what you , how your

10:05

life , how your family's life , is going to

10:07

change , if at all ? Did

10:09

you even have that notion yet ?

10:11

Mm-hmm , absolutely so my

10:14

thought process which I think is really important

10:16

for parents to hear and for also

10:18

Clinicians to hear , because I think

10:20

this can impact how you are interacting

10:22

with your patients my

10:25

thought process then was

10:27

informed by ignorance . So I

10:29

say that I thought Something's

10:32

going on with my kid . As we were racking

10:35

up diagnoses and learning what

10:38

was going on with him , at least to some degree

10:40

, I was thinking disability

10:43

is the worst thing that could

10:45

happen to my child and to

10:47

my family , that this is

10:49

horrible . This is terrible

10:51

. This is just awful

10:54

part of the reason . I thought that

10:56

is because , exactly what we're saying earlier , somebody

11:00

learned something and everybody , including

11:02

doctors . I am so sorry

11:04

. Oh my gosh , that is so . I

11:06

don't know how you're gonna do this . Everyone

11:09

was telling me how to feel and it was

11:11

all terrible . Yeah

11:13

, we're getting any information

11:15

from actual , real life disabled people

11:18

. I would have felt better about

11:20

things Now that I am a

11:22

decade in and I am

11:24

friends with and have spoken with and gotten

11:26

information from many actual disabled

11:29

people . I

11:31

now know the disability

11:33

itself is

11:35

Quite often and

11:38

generally Not the worst

11:40

thing and not even terrible . A lot

11:42

of times he is going through life in a different

11:44

way . But the barriers

11:47

in society and access to

11:49

Medical services , social

11:51

services , supports , all

11:53

of these things , all of the stuff

11:55

Can make it really

11:57

awful , and I wish

12:00

that at the very beginning , even

12:02

when we had said like I think something's going

12:04

on with our infants , I Wish

12:07

someone along the way had said

12:09

here's the thing , I don't see

12:12

anything . He's passed these

12:14

tests , but I'm going to

12:16

listen to you . Either there

12:19

will be something going on or there

12:21

won't . If there , will go about your business

12:23

right . If there is , disability

12:26

is not a tragedy . There

12:29

are resources to help you . I Will

12:32

help you . This hospital will help you . There

12:34

are supports in place . Now go have a

12:36

sandwich and Literally if

12:38

somebody said , if there's a problem

12:41

, there's not , this is not a tragedy and

12:43

there are supports , my journey

12:45

would have been very different , because in the beginning

12:47

I was a wreck .

12:49

Yeah , but like how , how

12:52

accessible or how easy

12:55

was it to navigate all the support system

12:57

? Because we know there's support but

13:00

One not everybody has access

13:02

to . Now that everybody can even afford it

13:04

, even if there is quote-unquote

13:06

, local or just used to getting no

13:08

access .

13:09

You're anticipating getting knows right because

13:11

it's not openly in front of you the diagnosis

13:13

, or at least the signs . If

13:15

the doctor is not seeing that or someone else is

13:17

not seeing that , you know they're gonna just say no

13:19

, no , no and put you in another direction . And it's

13:21

like this fight that you have to get up and get

13:23

ready for . I have to fight and advocate

13:26

for my son . That gets tiring after

13:28

a while or Possibly

13:30

could get you know , make you feel defeated . Yeah

13:33

, and you're just like I don't know what to do next . So

13:35

that's gotta be tough right there .

13:36

Yes , defeated is the exact

13:38

right word to use for how I

13:41

felt and how every single parent

13:43

I talked to feels about this , because

13:45

systems are not set up

13:47

for people with disabilities

13:49

, and certainly children's with disabilities , to

13:51

get the supports that they need . I

13:54

live in California , which is a state

13:56

that has a more robust system

13:59

of supports medical and social service

14:01

wise . It

14:04

varies wildly state to

14:06

state . One of my best friends is in Texas

14:08

and Her fight for services

14:11

has looked very different than my fight

14:13

for services . I've had conversations

14:16

with dear friends who are very

14:18

intelligent or amazing parents for

14:20

whom English is not their first language , and For

14:23

them to get phone calls returned and

14:25

to be taken seriously is even harder

14:27

for me , as someone

14:29

who speaks English , lives in a state

14:32

with more services and

14:34

has the incredible privilege

14:36

of I Was taking

14:38

time off from work to figure this

14:40

out . It felt

14:43

nearly impossible for

14:45

me . Mmm and I'm

14:48

one of the demographic le lucky

14:50

people . Yeah , you're white

14:52

lady , I'm a white .

14:55

White lady .

14:56

Yeah , health insurance

14:58

with health insurance right , yes , and

15:01

it felt nearly impossible

15:03

for me , and I

15:05

have talked to so many friends

15:07

for whom it was even harder

15:10

. There are systems in place

15:12

. Almost all of

15:14

us are starting out from a place of knowing

15:17

nothing about any

15:19

of this , yeah , and so while

15:21

you are postpartum

15:24

, in recovering physically from

15:27

all of that , you are also

15:29

Navigating systems

15:32

and emotions and everybody telling you what

15:34

a tragedy your child is . My child is not a tragedy

15:36

, all of these

15:38

things . It's really

15:41

hard . And so for Parents

15:44

just knowing okay , it's not

15:46

just me and I'm not alone in this

15:48

and for clinicians , when parents

15:51

come in there Kind of looking like

15:53

zombies no

15:55

, it is really hard for them

15:57

, not necessarily because they're freaked

15:59

out because their kid has X or Y or Z , but

16:02

because they're trying to Get

16:04

supports or learn what that is and

16:07

they're just rung out .

16:09

Yeah , and , and in new flash

16:12

, while we as physicians

16:14

are in the system and we are part

16:17

of the system , it's very disjointed

16:19

for us as well . Right , and so

16:21

becomes . I'm sure you've

16:23

encountered some at

16:25

some point in time asking a doctor

16:27

about Some social support system

16:30

, some other system , and they're like I

16:32

don't really know , let me send you over to the

16:35

social worker or let me send you over to a

16:37

case manager , because , honestly

16:39

, we're not very well versed on quote-unquote

16:41

the system either . And

16:44

so , on top of not

16:46

necessarily having a specific

16:48

diagnosis for your son

16:50

, even though you have many , like you said , I don't have

16:53

a specific , but we have many diagnoses

16:55

and then having to navigate

16:57

that like what

16:59

, what does that do to ? What

17:02

does that do to just kind of be

17:04

Speed with which

17:07

your child gets all

17:09

of the things that he needs ? It's

17:12

slow .

17:13

It's very slow and

17:16

there are

17:18

federal and state programs

17:20

available . Every state has

17:22

some version of early childhood programs

17:25

and early intervention programs . That

17:27

goes generally ages zero through

17:29

three . But there are

17:32

wait lists even to

17:34

get an evaluation Because

17:37

you need to be , of course , you need to be evaluated

17:39

in order to get into the systems

17:41

. So everything can take a

17:43

very long time . Everything often

17:46

is urgent . Certainly feels urgent as

17:48

a parent . I

17:50

think parents need to understand

17:53

that this is not the doctor's job

17:55

to know all of these systems

17:58

and what is available .

17:59

Yeah , I don't think people understand that . People

18:01

don't .

18:02

People don't . No , I'm sure you

18:04

guys have seen parents who you're like

18:06

whoa , how fast can I get you

18:08

out of my office ? Because

18:12

they're upset with you , really they're

18:14

upset with all the things

18:16

. They're upset with you for not

18:18

knowing . I think

18:20

parents need to understand that

18:23

if the doctor knows that , great

18:25

, that's their job . If the doctor does

18:27

not know that , that is not necessarily

18:29

their job . But what the

18:31

doctor can do is

18:34

just have one answer

18:36

of . If someone comes to

18:38

me saying what's the next

18:40

step when I leave this office ? Right

18:42

, know

18:45

what your state social service agency

18:48

is for us , for

18:51

zero to three and then above that , for

18:53

individuals with developmental disabilities

18:55

in California , that's the regional center

18:57

. If doctors know

18:59

, for example , in California , to say

19:01

I don't have the answers for

19:04

where to go next , except

19:06

that I can tell you that contacting

19:08

your local regional center will

19:11

get you there . So , contact

19:13

your local regional center If

19:16

physicians say I want to be able to head this

19:18

off and

19:20

to give parents a next step . Know

19:22

what the social service agency is

19:25

, because it

19:27

may be challenging to navigate but that

19:29

is the next step .

19:31

Right , I was interested in what you said specifically

19:34

about early intervention . Let's

19:36

talk about some of the specific services . I know it's obviously

19:40

since you wrote the book , the handbook on it . You

19:42

know better than us and so forth . So

19:44

question what happens in California may

19:46

be different than what happens here in Jersey versus New

19:48

York , texas . You get what I'm saying . So

19:51

if someone is navigating through

19:53

this , what are some of the services that they should be absolutely

19:55

looking for ? Let's say between zero

19:57

and three , and then maybe

20:00

even you could take it a little bit past that . What are some

20:02

of the services they should be looking for that may

20:04

be the same among all the states ?

20:07

So yes , and thank you for pointing out , it

20:09

is not universal across all states

20:11

, even some things that get partially federally

20:13

funded , and

20:16

all services that are

20:18

available are not necessarily

20:20

appropriate for all children . So

20:23

parents also need to walk in not

20:25

demanding these services for their child

20:27

because they might not be appropriate

20:30

. And so you need to look at

20:32

where your child is developmentally

20:35

and what services and supports

20:37

they would need in order

20:40

to get developmentally

20:42

on track with

20:44

their non-disabled peers . And just because

20:47

your child has developmental

20:49

delays doesn't necessarily mean they are or

20:51

will be disabled . So

20:54

that's a whole range of things . So for

20:56

us , because our son checks a lot of boxes

20:59

, we accessed many

21:01

services . His early intervention services

21:03

included feeding therapy

21:05

For him . He got

21:07

a feeding tube at three months old

21:09

and he still has the feeding tube

21:11

. It's a great intervention that

21:13

works for him and keeps him alive . He's

21:17

physically able

21:19

to eat by mouth but chooses

21:21

not to for a variety of reasons and motor

21:24

issues . So feeding

21:26

therapy is one . If your child isn't eating

21:29

, it could be breastfeeding or bottle related

21:31

. It could be actual food related . Speech

21:35

and language therapy For

21:38

the very younger children . An infant

21:40

might not get speech and language therapy

21:43

, but if you're looking . If a speech and language

21:45

therapist is looking at how

21:47

their mouth is moving when they are

21:49

eating , can give you a sense

21:51

of motor function-wise

21:54

what they might need . There's

21:57

physical therapy , which focuses

21:59

on gross motor , ie

22:01

the big picture , physical things

22:04

like sitting , standing , walking

22:06

, crawling , for example . There's occupational

22:08

therapy , which focuses

22:10

on the fine

22:13

motor or the activities

22:15

of daily living , ie hand

22:18

use , holding things , toys

22:20

when they're little , mom's hand pencils

22:23

when they're older , whatever that looks like . There

22:26

are also different versions of child development

22:29

or play therapy or interventions

22:31

. You see that a lot in early

22:34

intervention therapy when

22:36

kids aren't necessarily engaging

22:38

with the world or other people

22:40

or their environment , of

22:43

how to elicit play

22:45

and it's

22:47

very easy to just load up a kid on therapy

22:49

, but play is

22:52

the work and the job of childhood

22:54

. So all of this should

22:56

look like play and shouldn't be

22:58

miserable and terrible and

23:01

shouldn't be work , and

23:03

we would do a lot of our early intervention

23:05

therapies at the park and outdoors

23:08

and places where children

23:10

would often be , and

23:15

that is exciting and natural

23:17

. As children

23:19

get older , behavior

23:22

therapy is something that can come into

23:24

the mix . That is something

23:27

to really look at

23:29

if you are trying to

23:31

encourage the behaviors

23:33

that make their child who they are , or

23:35

if your child , for example , is neurodivergent

23:38

or autistic and if you're thinking

23:40

, maybe if we do enough therapy we can

23:42

unautism our child , don't

23:46

try and force your child to just comply

23:48

with all grownups , because that sets up all

23:50

kinds of safety issues .

23:52

Once again , the plan , the plan to the plan

23:54

derailed yeah .

23:55

And the plan's derailed all the time , don't they

23:57

? Yeah ?

24:00

The plan is always just like a . The

24:03

plan feels like a , like

24:06

almost like a grass for normalcy , almost

24:09

, yes , right , even

24:11

when you get a diagnosis . I can imagine it's like , well

24:13

, okay , if I get a diagnosis , then

24:15

I need to have a plan which makes sense , right

24:17

, so that you can put all of your eggs in a certain

24:19

basket . But even that is very difficult

24:22

, right . Like I can imagine , like

24:24

just the thought process of , well , how would I get my child

24:26

to the park so that they can get the services

24:28

that they need ? But that makes sense , right , like you can't have your

24:31

child coming getting therapy

24:33

and almost feeling like it's work , like bringing

24:35

a lunch pail to work .

24:36

Like just good kids . I know they're clocking

24:39

in , they're toddlers . Yeah , it doesn't work that way

24:41

.

24:41

You know , you have to be .

24:42

It's gonna take some malleability , basically .

24:45

Absolutely , and I love

24:47

that you guys have had discussions so

24:49

much about the book Atomic Habits , which I can just

24:51

talk about all day , and my book is like Atomic

24:54

Habits . if you have a disabled kid and

24:57

the idea of we're not

24:59

succeeding on these habits , you

25:01

know we're failing on our habits and

25:03

we're succeeding on our systems and

25:07

especially you know all of us . But

25:09

especially when you have a kid

25:11

who's disabled and who

25:13

requires a lot more

25:15

and different support , what

25:18

systems can you put into

25:21

place so that you

25:23

can fall back on those systems ? And

25:25

those days when you're like you know what ? I

25:27

spent two hours playing with my kid at the park

25:29

and watching the birds and all this

25:31

insurance stuff didn't get done . But

25:34

there's a system for getting it done , so

25:36

that I can spend

25:38

time with my family and I can be a

25:40

person and I can realize

25:43

that my personal life is important . But

25:45

getting these systems in place for yourself

25:47

so that you have those to fall

25:49

back on .

25:50

Yeah , can you share some of yours , like what kind of systems

25:53

do you have ?

25:53

Oh systems for my systems

25:56

. I have not heard some .

25:58

Systems upon systems .

26:00

I think in bullet points . So

26:02

I do

26:05

a lot of paperwork that I need to

26:07

get for things I need to get reimbursed

26:09

for . So

26:11

I have time set off on my schedule

26:14

every month . This is

26:16

the date when I enter

26:18

the info in my computer . I follow

26:20

up if these gaps in information

26:23

. I need to get this information from

26:25

these therapists . I need to be

26:27

sure that the checks have gone through . And

26:29

, looking at that system , I

26:32

have the envelopes . When I'm gonna

26:34

mail all this paperwork in , I just

26:36

I sit down with

26:38

like fancy coffee or tea or a lot

26:40

of chocolate and I literally

26:43

just put stamps

26:45

and return addresses on labels on the

26:47

front of those envelopes and I have a stack

26:49

of them in the folder so that when

26:51

I finish the paperwork , the envelopes

26:53

are already there . And it's ready to go and

26:56

I don't have to wait to get stamps , because if I

26:58

wait that's gonna take me longer to

27:00

get my money back .

27:02

Every year . That's a good motivation right

27:04

there .

27:05

Right , because it is . It's about what

27:07

is your motivation for doing this stuff ? And

27:10

if the motivation is , once

27:12

I schedule this evaluation , my kids eventually

27:15

gonna be getting feeding therapy . That's really

27:17

good and that's paid for at state or

27:19

whether it's there's thousands of dollars

27:21

of things I need to get reimbursed for . That's

27:24

real motivating to get that money back

27:26

. And what is your motivation

27:28

for doing this and how can

27:30

I get this done right , but also as

27:33

quickly as possible ? I'm really good

27:35

at all this paperwork , but I don't enjoy it

27:37

. It's not fun . I'm

27:39

really good at getting

27:41

it done and scheduling

27:45

the time to get it done so

27:47

that I know now's not my time to scroll

27:50

around on the internet , now's my

27:52

time to do this and send

27:55

that on its way . And

27:57

part of it is starting

27:59

the systems of saying what is one thing

28:02

I can do and

28:04

do that thing and that's it . Even that's

28:06

all you can do today . Is what is that one thing ?

28:09

No matter where you are in your career . You've

28:11

seen patients your age or younger

28:13

get seriously injured , have

28:15

a long-term illness or even have a mental

28:17

health issue that affects their ability to work . Now

28:20

what if that was you ? No , for real . What

28:22

if that was you ? Without disability

28:24

insurance , how are you gonna replace your paycheck

28:27

? In episode 176

28:29

, jamie Fleissner of Sefa Life Insurance

28:31

explains why the best time to buy disability

28:33

insurance is during your residency

28:35

.

28:36

Most people , most physicians , acquire their

28:39

disability policies during residency

28:41

, and there's several reasons . First of all , when

28:43

you're younger , you're able to obtain the

28:45

insurance because they ask you a whole host

28:47

of medical history and so

28:49

you usually don't get healthier over time

28:51

. Usually you get less healthy over time . So when

28:53

you're healthy , it's easier to acquire

28:55

the coverage . Number two it's also less

28:57

expensive because it's based on your age and

28:59

your health . You're not getting younger or

29:02

healthier over time , so you're at the ideal time . The earlier

29:04

you get it and the younger you are , the less

29:06

expensive it's going to be .

29:08

So , whether you're a resident or you're in attending , it's

29:11

never too late to protect your income . Renee

29:13

and I , we use Sefa Life Insurance to find

29:15

a disability policy that fit our

29:17

needs and budget . So

29:19

what are you waiting for ? Check out setfalifeinsurancecom

29:23

Once again . That's setfalifeinsurancecom

29:27

. Yeah , I

29:30

had a question , another question . I think having

29:32

a disabled child is difficult

29:34

as it is . Navigating the

29:36

system and you don't know anything

29:39

is as difficult as it can be . What

29:41

do you do ? What's your advice for those who

29:44

are trying to navigate all of those different things but

29:46

have a spouse who may be on a

29:48

different page ? Example our

29:50

child went through early intervention , but I

29:53

was initially saying the

29:55

child will grow out of it and she was like

29:57

, no , he needs to , we

29:59

need to go the route of early intervention

30:01

, we need some services . And I was like , ah , what's the big deal

30:03

? So maybe it may not even be a spouse

30:05

, it could be a family member . I

30:07

think I was the only one on board with her A mom

30:09

, a dad , other parts of your

30:11

nuclear family or extended family are saying just

30:13

.

30:14

It'll be fine . It's not that bad .

30:16

What's your advice in that situation where

30:19

just you , you're the only

30:21

advocate , or how do you push

30:23

too hard , push back ? Give us advice on that .

30:25

Mm-hmm . That is such

30:27

an important question because there's so

30:29

many dynamics . Also , culture

30:31

can play into that hugely

30:33

, and whether culture is telling

30:36

you your child isn't

30:38

disabled or whether

30:40

your culture is telling you don't

30:42

admit your child is disabled because

30:45

how we view that is no good

30:47

, and I heard those stories from

30:50

dear and intelligent friends

30:52

. What

30:54

, how I start , is

30:56

I'm making things easier on me and

30:59

I'm very fortunate that my husband

31:02

has been on board and

31:04

there has been a clarity to

31:06

having a child who so clearly

31:08

was so delayed . From the beginning there

31:11

was no doubt of whether or not he needed

31:13

interventions , especially

31:15

for kiddos with non-visible disabilities

31:17

. It can be really

31:20

hard to convince yourself and

31:22

or others that this is

31:24

necessary . I always

31:27

start from a place of I need

31:29

to make this easier for me

31:31

, and

31:34

if my husband was

31:36

saying , oh , he doesn't need feeding

31:38

therapy , I think my

31:41

approach would have been here's

31:43

what I need . I need to

31:45

find a way to make this easier

31:48

for me and my child

31:50

and for all of us

31:52

, and especially for the primary

31:54

caregiver , which is very often the

31:56

mom I

31:58

think it's hard to argue with . I

32:01

, as a mom , I am struggling . This

32:05

will make it easier for me , so

32:08

let's try this . And you know what

32:10

, if this doesn't work , if

32:12

this is aversive to my kid

32:14

or if it totally upends

32:16

our schedule in a way that does not align

32:19

with our family values , we

32:21

will consider there

32:23

is no harm in

32:25

trying . Let's

32:27

just see . And

32:30

if people are really pushing back

32:32

, you can say let's see how this

32:35

goes . I am acting on

32:37

the advice of my pediatrician . So you just

32:39

blame that pediatrician who's sending you to early intervention

32:41

, like you know what , and we have

32:43

an outstanding pediatrician who

32:48

has held our hand every step of the way say

32:50

I'm acting on her advice

32:52

. Let's do these services

32:54

for a month and then let's sit down and talk

32:56

about how it's going . Yeah , and

32:59

I think accessing

33:01

services , even if you know there's

33:04

a disability at play or suspect

33:06

or aren't ready to name

33:08

it , that's okay . You

33:10

do not need a diagnosis , you only

33:12

need an evaluation that is showing a delay

33:15

in order to access early

33:17

intervention services . And

33:21

you don't need to say I think our

33:23

kid's real disabled . You

33:25

can say you know what , our

33:27

pediatrician is advising this .

33:30

I don't know .

33:31

But I think this would make my life easier

33:33

. Let's do this , cause I think this

33:35

would make life easier , okay .

33:38

Yeah , yeah , no , I

33:40

totally agree with you . My

33:42

son was diagnosed with speech delay at

33:44

18 months and it

33:46

was just like wait , what ? What do you mean

33:48

? You know , especially when you're a doctor and you

33:51

don't pick it up , cause he was always talking

33:53

in the house . He has an older brother , he

33:55

babbles and you know , he was babbling at the

33:57

time as well , and so

33:59

I was like I didn't realize that he actually wasn't

34:01

saying words , that the words

34:03

that were being said were being said by his older

34:06

brother but not by him . That's

34:08

really interesting . Yeah

34:11

, yeah , and you know , and

34:13

, like you said , make it easier for

34:15

yourself and for me . Honestly , instead

34:17

of wondering , wondering

34:20

like , okay , well , is he going to talk , it actually

34:22

was easier for me to

34:24

take action . I had to feel

34:26

like I was doing something

34:28

, yes , and I was like , well

34:30

, it can't harm him to do something

34:32

about potentially helping him to

34:35

speak . So for me , that

34:37

was actually making it easier on myself

34:39

Although my husband will tell you my schedule

34:41

was completely hectic , but

34:43

it was in line with allowing

34:46

me to feel like I'm doing

34:48

something and it was action oriented

34:51

and I just felt better about

34:53

it .

34:53

But there's also the pressure right , like even your

34:55

side of the family , my side of the family , they're like give him

34:57

time . All he needs is time . You know

34:59

why are you guys getting him evaluated

35:02

here or what have you ? He'll be fine . It's

35:04

almost like they're saying something to make themselves

35:06

feel better , because they don't want to admit

35:08

that maybe , possibly , something is going

35:10

on . So if they see the child

35:13

getting these therapy and services now

35:15

, they have to admit . My grandchild , my

35:17

nephew , my , you know , whatever

35:19

it may be has some

35:21

type of issue . I don't know how to handle it and

35:24

now my anxiety is going to play out . I

35:26

think that could be difficult to navigate

35:28

.

35:29

Yes , and I see that all

35:31

the time , you know , with my

35:34

kid , with all the other kids

35:36

of other people kind of projecting

35:38

their feelings onto you and

35:41

that has been one of the most

35:43

exhausting and challenging pieces is

35:46

feeling like you are managing everybody

35:48

else's emotional emotions , everybody's

35:50

emotions , and you're just like

35:52

you know . If

35:55

you wanted to , you

35:58

know , be able to do 100 push-ups by the end

36:00

of this month , you might want to hire a personal trainer

36:02

. No shame in that , no

36:04

shame in that , you just do it . Yeah

36:07

, I want my child to have

36:09

an easier time communicating

36:11

with his peers . We're

36:14

going to hire a personal trainer , but it's going to be called a speech

36:16

therapist , so insurance .

36:17

Exactly , exactly which

36:20

, you know . We talked a little bit about

36:22

money . You

36:24

know , as two doctors , early intervention

36:27

oftentimes is , you know

36:29

, a state-funded program , sometimes

36:31

, at least in New Jersey , on a sliding scale

36:33

depending on how much money you make

36:35

, yep , and so you

36:38

know , you can imagine , with two doctors .

36:41

We didn't qualify for that we were not sliding scale

36:43

eligible .

36:46

Yeah , what about the money Like

36:48

for ? You know , for our experience

36:51

we ended up doing some private as

36:53

well , but

36:55

I know for a lot of folks who

36:57

don't just have a child with speech

36:59

delay but may have extensive needs

37:02

, like your child . What about

37:05

the money Like where is

37:07

all this coming from ? Because insurance cannot

37:09

and probably is not covering all

37:11

of the services to the fullest

37:14

extent .

37:15

Mm-hmm .

37:16

So financially this can be a total

37:19

mess , partly

37:21

because it can be so expensive , partly

37:23

because it can be stressful financially and

37:25

partly just figuring out what is covered

37:28

and also what is necessary . And do you really

37:30

need to do that ? Number

37:33

one that I

37:36

have learned over and over there

37:39

is no shame in wherever

37:41

you are financially .

37:43

Right .

37:43

Period Right , you

37:45

need to get a

37:47

total clarity

37:50

on where you are financially

37:52

. Having someone with a disability

37:55

and a family costs . On average , I believe

37:57

it's an extra like $12,000

38:00

a year .

38:00

I believe that ? Say that again .

38:03

Well , I think it's $12,000 a year . I

38:05

believe that and for

38:08

some people they could write that check today

38:10

. For most people that

38:13

is significant and that is after taxes

38:15

.

38:15

Right , right .

38:16

So , financially

38:18

, do not be ashamed

38:21

of wherever you are , but you need to know

38:23

where you are .

38:24

Mm-hmm .

38:25

You need to know how much money

38:27

your family needs to

38:29

sustain the lifestyle , to pay

38:31

off debt , to save for future

38:33

, like you need to have your general

38:36

financial plans so that you know how

38:38

much you can spend going into this , and

38:41

you need to know what

38:44

you could possibly access and what

38:46

that will cost you . What I mean by that . Do

38:49

you have private insurance ? Get

38:52

to know that .

38:53

explanation of benefits , Boy is that

38:55

going to be boring ?

38:56

Yeah , However the money that you

38:58

will save is not boring . So

39:00

familiarize yourself with your plan , whether

39:02

it's a private insurance plan , whether it's

39:04

a Medicare government-type

39:08

plan . There

39:11

are private insurance programs

39:13

. There's Medicare that is open

39:16

to people based on income levels . There's

39:18

also the CHIP , the Children's Health Insurance

39:20

Program , that is both federally

39:23

and state-funded , so it is administered

39:25

very differently within each state . Right , and

39:27

that is available to families who don't

39:29

necessarily qualify for Medicare

39:32

based on income but might , based

39:34

on CHIP , your child's disability

39:36

might qualify them for

39:38

Medicare or CHIP

39:41

if your finances do not qualify

39:43

for them . It's really state by state

39:46

. So know what is available

39:48

and can be covered through those and

39:51

find out social service-wise

39:54

what can be covered If

39:56

you're like I don't know where to start . I don't know any friends

39:58

who know where to start . Right , I

40:00

did an experiment and I

40:02

Googled Department of Developmental

40:04

Services California , indiana

40:07

and pulled up different states

40:09

Department of Developmental Services

40:11

and I just emailed random people and

40:14

was like hey , I'm helping families who

40:16

don't have the income to make

40:19

a financial plan for their child's future

40:21

, make a care

40:24

plan for when they're not here to access

40:26

services . Where do we start ? And

40:29

I heard back , and so

40:31

don't be afraid of emailing your Department

40:34

of Developmental Services or your Department

40:36

of Health and Human Services and say

40:38

hi , random person , I

40:40

need help figuring this out . And

40:43

quite hopefully and I think , likely

40:45

they'll get back to you and even

40:47

if they don't have the answer , they can send

40:49

you on a path that does

40:52

. But it all starts with where

40:55

are you financially ? Do

40:57

you have an extra $50,000 a

40:59

year to spend on equipment

41:01

and therapies and alternative therapies

41:03

? and all the things Right

41:05

, or are

41:08

you struggling to make ends meet

41:10

and you don't know where this fits in

41:12

? You can also talk to

41:14

hospital . Social workers are a great

41:17

resource and there

41:19

is no shame in even calling

41:21

up the social worker before your visit

41:23

at the hospital and say

41:25

I don't have the $8 for the parking

41:28

garage . That is a barrier

41:30

in my child's getting care . What

41:33

can we do about that ? Hospital parking

41:35

garages are so expensive . You

41:39

know , right , I'll get it .

41:41

It's a thing . That is a

41:43

thing . That's a meal , yeah Right

41:46

.

41:46

Thank you , and that could be a meal for your whole

41:48

family , and that may be their only meal

41:50

of the day . And if you

41:52

have to choose between feeding your children

41:55

and paying for

41:57

parking and

41:59

gas , which is so expensive

42:02

, do not be

42:04

ashamed to say you

42:07

know what , if I don't have to pay for these

42:09

things or if I can find a way

42:11

to get assistance in this

42:13

? People

42:16

are not looking down on you . They'll

42:18

probably say good for you . I am so

42:20

glad you called . We've got a program for that

42:23

, Right .

42:23

Right , oh , that's so very important

42:25

. You know the fact that money

42:28

could even just be a barrier

42:30

to you know all of these services

42:33

is just , it really

42:35

is a crime , really . Yes , and

42:38

then you start thinking about , like , your

42:40

future , right , your future , your

42:42

child's future , in particular . You

42:44

know we talk a lot about life insurance

42:47

on this podcast . A lot about

42:49

that , right , I love that you do . Yes , yes

42:51

, and you know Ne is

42:54

very well known for

42:57

hating whole life insurance . He's

42:59

looking at me like what is she about to say ? He's

43:01

very well known for hating whole life insurance

43:04

, but one of the things that we

43:06

haven't really covered on this show

43:08

, because he always does give the caveat

43:10

not everyone needs whole life

43:12

insurance . Some people do . But

43:16

that caveat that he often gives

43:18

is if you think that your child

43:21

is going to need care in the

43:23

future beyond you know your

43:25

living years that that might actually

43:27

be a good idea . And

43:29

you know , are you , where

43:31

are you in terms of planning for

43:34

your son's future , considering

43:37

the number of disabilities that he has

43:39

?

43:39

Yes , we've got a system for that .

43:41

I figured that as it turns out .

43:44

I figured that is the thing

43:46

that was keeping me up at night until

43:49

we had a system of like , if I'm

43:51

falling into a woodchipper , like all

43:53

this falls apart , right , you feel like

43:55

you can't die . Yes , yes

43:57

, I know my friends and I

43:59

who have kids with extensive

44:01

support needs . We're like can they actually

44:04

become vampires ? Because it has some disadvantages

44:07

, right , but like they've got great

44:09

skin .

44:10

I could do this .

44:11

And they live forever , right

44:14

, that's right , and they sleep all day . And

44:16

they sleep all day , which I really want to

44:18

do . I desperately want that

44:20

. The

44:23

future care plan is

44:25

perhaps the most

44:27

daunting thing , partly

44:30

because it feels like I'm good today

44:32

, I can just put that off . But

44:35

the reality is , if

44:38

something happens to you

44:40

, then what ? And

44:43

families might

44:45

say like , oh , we're good , my kid's not

44:47

going to be adult for a while . He'll go live with Uncle

44:49

Jimmy . Uncle Jimmy's awesome , that'll be great Time

44:51

goes fast . By the way , if

44:53

you talk to Uncle Jimmy about that , because Uncle Jimmy

44:55

might be like no , no , no , no , no , no , I'm going to

44:58

Nepal and seeing what happens and

45:01

we're like cool in Nepal , I love Nepal . So

45:04

you need a

45:06

plan . It

45:10

can be terrifying

45:12

if you do not have success

45:14

or guardians ie if something

45:16

happens to you and or your partner who

45:18

gets your child , either

45:21

as children or as adults

45:23

, who will

45:25

not be able to live independently

45:27

. Our son Aaron will

45:30

not be able to live independently

45:32

period , whatever

45:36

form that takes . I want as he gets

45:38

older . He's 10 , he doesn't care about this

45:40

stuff right now . He wants

45:42

to watch Mickey Mouse . I

45:45

don't think you're 10 , that's what

45:47

you should want . But as

45:49

he gets older , we will review these plans

45:52

with him and make sure that it is with

45:54

his wishes and , to the extent that he is interested

45:57

and able , will participate

45:59

in the care planning . Back

46:01

to your finances . If

46:04

you are not here to

46:06

make income to access

46:08

the services , whatever that is , what

46:12

will your child need and

46:14

whether that's right now or whether that's

46:16

when your child is 50

46:18

and you're gone or

46:22

not making an income and

46:24

you really do need to think about and talk

46:27

about a . They're called

46:29

special needs financial planners usually

46:31

. Sometimes there's a movement towards calling

46:33

them disability planners , which is great . But

46:36

the fastest Google is special needs financial

46:39

planner and you need to speak

46:41

with someone who specifically

46:44

knows the ins and outs of

46:46

support for individuals with disability

46:49

, because they will likely be able to speak

46:51

to future housing options , whether

46:53

that is with you in a group

46:55

home , at home , with support

46:57

, whatever that is . They

47:00

will also be able to speak

47:02

to in your state . What

47:05

is the amount of money that this person can

47:07

have in their name when they turn

47:09

18 and not lose government

47:12

benefits ? It's around

47:14

$2,000 . That

47:16

is nothing . Some

47:19

people spend that in a month , especially if you

47:21

are paying for caregivers . You might spend

47:23

that in a week . You

47:25

need to know how to have finances

47:28

in place so that if

47:30

Aunt Sally dies and leaves

47:32

your child , a million dollars if that goes

47:34

into your child's name . Does your child

47:36

lose their housing immediately ? And

47:39

child I'm saying it could be a 35

47:41

year old , but my boys will

47:43

always be my children , but they'll be grown ups

47:45

and you need

47:48

to talk to someone . It's different in

47:50

every state . It is a mess

47:52

, but it's figure outable of

47:55

how

47:57

things should be set up . They're

48:00

called special needs trusts . We're trying to move

48:02

away from the term special needs because

48:04

people with disabilities have told

48:06

us to do so and that's a whole other thing . So

48:09

disability , but they're called special needs trusts

48:11

. So do you need a special needs

48:13

trust ? Do you need a special savings account

48:15

? Do you need something that you can change

48:18

the terms of a future care plan ? Do

48:20

you need something locked in place ? Do

48:22

you need to talk about all the details

48:24

with anyone you have listed

48:27

as a guardian who might be

48:29

caring for your children now or later

48:31

? You need

48:33

to speak with someone who knows

48:35

the specifics of this and is not

48:37

a financial planner just for families

48:40

without disability factored in , because

48:42

your child absolutely could

48:45

lose all their services .

48:47

Yeah .

48:47

Yeah , we definitely need to consider .

48:49

Yeah , we appreciate you dropping that , because I

48:51

didn't know that there were financial advisors specifically

48:53

for children

48:56

with disabilities or people in general who have disabilities

48:59

or specific needs . So

49:01

, yeah , but that's the reason why we need to get this book

49:03

.

49:04

Yes , thank you .

49:05

You know what I'm having it here with all my posts . There you

49:07

go .

49:09

You guys have covered all the things . And

49:11

also don't

49:14

let your finances be a

49:16

barrier to creating a future care

49:18

plan . How much this plan is going

49:20

to cost you to put together doesn't

49:23

have to be a lot . It can just

49:26

start with a will of who gets

49:28

what , and that includes your stuff and your kids

49:30

and your dog . But

49:34

it is often done based on your

49:36

assets , based on how much you have

49:38

. So if you're a gazillionaire

49:41

, yeah , it's going to be pricey , but it's fine

49:43

, you don't care Money means nothing to you If

49:46

you say I really don't

49:48

have a lot of money , but I need to create a will

49:50

start with that

49:53

. Also , back to the what's

49:55

going to make your life easier . I bet you'll sleep

49:57

better once you know

49:59

. if something happens to you . Here's

50:02

what it is . How do you determine

50:04

if you need a certain type of life

50:06

insurance , or how much life insurance do you need

50:08

? You look at what

50:11

expenses will need to be

50:13

covered when you are no

50:15

longer here for your child

50:17

or children , and when

50:20

one becomes an adult , is this one going

50:22

to be able to support themselves ? This one is not

50:24

. What finances will they need in place and

50:27

work backwards from that number

50:29

of what the needs are to

50:31

determine and then talk to your

50:33

planner about insurance

50:36

and someone who is an expert in insurance

50:38

because they can speak to it . If

50:40

you have no insurance , you might

50:42

not sleep as well at night .

50:44

Right , right , yeah

50:46

Well , thank you so much . I

50:49

mean , I think all of these things you know

50:51

, when we think about disabilities and

50:54

just kind of what it takes to

50:56

care for someone with a disability

50:59

, I don't know that people understand

51:01

the gamut of things that you actually

51:03

have to consider , right From

51:05

the diagnosis to the care

51:08

plans , to the equipment

51:10

, to the finances of paying

51:12

for all of that , but then also thinking

51:15

about the future and what happens

51:17

, especially if it is a dependent or

51:19

a child who has that disability

51:21

, and what happens when you're not there . So

51:24

you know , I think definitely your book

51:26

is one that is very

51:29

much needed for lots of

51:31

people out there , including doctors

51:33

. Like I said , we

51:35

don't know how to navigate this level

51:37

of a system .

51:38

We know how to diagnose , we don't necessarily know the services

51:40

that are available . Right , and just

51:43

because we don't know doesn't mean that that's the stop and

51:45

point . For parents or

51:47

caretakers of children , it's

51:49

important that we read that book also , so that we know . Okay

51:51

, listen here are the things . Here are the things

51:54

.

51:54

Yeah .

51:55

At least here's the advice , that one specific piece of advice that Kelly mentioned

51:58

earlier in the interview . At least you can give

52:00

that answer or even just say

52:02

let's just be open to trying something

52:04

, maybe for a month , yeah .

52:06

Exactly . Shout out to the pediatricians

52:08

yeah .

52:10

They know more about the services than they

52:12

do .

52:12

Yes , yeah , and , like you said , that

52:14

was where we got our start was

52:16

the pediatrician recommended

52:19

early intervention . So , yeah

52:21

, so this was really really great , kelly

52:24

, thank you guys .

52:25

so much for all that you do and

52:27

I'm just honored to be part

52:30

of your team . I just love what you do .

52:32

Thank you so much . No , this was great , and

52:35

everybody listening everything .

52:37

No one tells you about parenting a disabled

52:39

child , your guide to the essential systems

52:42

, services and supports . That

52:44

link is going to be in the show notes , y'all . So

52:46

this book is on Amazon .

52:49

It is on Amazon and orderable at

52:51

all . The book places .

52:52

There you go . Awesome , awesome , kelly

52:54

. Thank you so much . This is Kelly Coleman

52:56

. Everybody , make sure you get that book

52:59

, if not for yourself or

53:01

a family member , just even

53:03

you know , just to know

53:05

what you should be doing and

53:07

how you can contribute to making our patients'

53:10

lives a little bit easier . So

53:12

thank you again , kelly .

53:14

Thank you guys . Thank you so much , all right .

53:19

Thank you , thank

53:21

you .