Caring for a Child with Disabilities. #401

I now know the disability itself is quite often and generally not the worst thing and not even terrible a lot of times . But the barriers in society and access to medical services , social services , supports can make it really awful , and I wish someone along the way had said disability is not a tragedy , there are resources to help you .

My journey would have been very different because in the beginning I was a wreck .

All you have to do is show that your income has increased and you can buy more benefits at that time . No medical questions asked .

Everybody always has a plan in their mind . They think that life is gonna go perfectly , but a lot of times that's just not the way how it goes , particularly with our children . We have a plan in our head and our plan is not always necessarily what's going to actually play out . So we have an amazing guest here for you guys .

Today we're gonna talk about what happens if you have a disability in your family , particularly with your children , and how to navigate that , not only from a healthcare standpoint , but also from a financial standpoint . So we have Kelly Coleman , who is here to talk to us about all of that .

She's the author of the book Everything no One Tells you About Parenting A Disabled Child your guide to the essential systems , services and supports . Okay , so this is a handbook that we're gonna discuss , but also , more importantly , we're gonna talk more about Kelly's background and how she's supporting her children .

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

I love your podcast as a person who is not a doctor and not a medical student , but the fact that you guys are bringing humor and reality to discussions of money and to finance of like we can let the air out of the balloon and not freak out about these things , but actually discuss them as real humans , which I love .

I think you make it easier for the generation behind you that's coming to say , hmm , I don't necessarily have to follow the traditional path . I can follow maybe this path or just trailblaze my own and know that I'm just gonna be okay , right .

So that's why we're here is to kind of make it easier for other people who are interested , maybe , in this type of lifestyle or maybe interested in well , I come from a different background and maybe medicine is just not giving me everything I need . I need to do something different . We listen to those guys . So that's why we're here .

And I think that's really important , because I don't think that when anyone thinks about having children , that they think that they're ever going to have a child with a disability . So what was that like for you ? Was it something that you found out prenatally ? Was it something that you found out afterwards ?

He's 10 years old and , in addition to loving airplanes and swimming and playing the same song over and over all day long , he has multiple disabilities , and for him that includes a yet undiagnosed genetic disorder Syndrome

. We've done literally every test science has available up through full genome sequencing , and now I know a lot about genetics . Who knew , right , right ? right , so you know genetics , neurology , gastroenterology , neuro-gastroenterology , neuro-ophthalmology , like you name it .

Oh you poor thing , because disability isn't something that should warrant that . Oh you poor thing , it's just information . And for our son , he is happy , he is healthy , he loves school , he is mobile . So that's part of his presentation , is he ?

I'm like , yeah , that's it , and I think so many of us think we reach a point of adulthood when we're like I got this figured out , like I'm not gonna get punched in the face . You will get punched in the face whether it's through parenting or life or career or finances . Certainly it's coming for you .

So for us , we had no signs prenatally that anything was going on out of the ordinary . Our pregnancy was exactly , pretty much identical to our prior pregnancy , so we were just like going about life , it's all good .

And when our son Aaron was born , there was the just mom red light in the head saying something's going on and I just knew from day one , and the nurses like , oh , you're just hormonal and tired , have some ice chips . And I'm like , eh , there's something going on . And he passed the tests .

The very first sign that there was something going on was that he had ridges along his skull , that it was presumed to be craniosynostosis which I'm sure your listeners know , but for those who don't , is when the plates of the skull fuse prematurely in babies I believe it's only babies and and so we were horrified at the idea that he would have to have surgery

about one year old to separate the plates of the skull and , you know , eventually his hair would grow over it and he goes about life . It turns out that might have been an easier path for us . He did not have craniosynostosis .

His brain size , we learned from an MRI , was within the range of normal , was the description from Several neuro radiologists who read that , but within the low range of normal . So his brain was not growing fast enough to separate the plates in the skull , and so of course that's a sign that there might be something going on .

And we accumulated diagnoses for a long time and to get to the list where we are today and For us , we had pretty much no knowledge , no experience of what this journey would be and , as you know , starting out anything from a place of ignorance Is a really hard place really yeah , it's a really hard place to start , yeah . I'm sure .

What's your thought process at that point in terms of Kind of what you , how your life , how your family's life , is going to change , if at all ? Did you even have that notion yet ?

As we were racking up diagnoses and learning what was going on with him , at least to some degree , I was thinking disability is the worst thing that could happen to my child and to my family , that this is horrible . This is terrible . This is just awful part of the reason .

I thought that is because , exactly what we're saying earlier , somebody learned something and everybody , including doctors . I am so sorry . Oh my gosh , that is so . I don't know how you're gonna do this . Everyone was telling me how to feel and it was all terrible . Yeah , we're getting any information from actual , real life disabled people .

I would have felt better about things Now that I am a decade in and I am friends with and have spoken with and gotten information from many actual disabled people . I now know the disability itself is Quite often and generally Not the worst thing and not even terrible . A lot of times he is going through life in a different way .

But the barriers in society and access to Medical services , social services , supports , all of these things , all of the stuff Can make it really awful , and I wish that at the very beginning , even when we had said like I think something's going on with our infants , I Wish someone along the way had said here's the thing , I don't see anything .

He's passed these tests , but I'm going to listen to you . Either there will be something going on or there won't . If there , will go about your business right . If there is , disability is not a tragedy . There are resources to help you . I Will help you . This hospital will help you . There are supports in place .

Now go have a sandwich and Literally if somebody said , if there's a problem , there's not , this is not a tragedy and there are supports , my journey would have been very different , because in the beginning I was a wreck .

I have to fight and advocate for my son . That gets tiring after a while or Possibly could get you know , make you feel defeated . Yeah , and you're just like I don't know what to do next . So that's gotta be tough right there .

I live in California , which is a state that has a more robust system of supports medical and social service wise . It varies wildly state to state . One of my best friends is in Texas and Her fight for services has looked very different than my fight for services .

I've had conversations with dear friends who are very intelligent or amazing parents for whom English is not their first language , and For them to get phone calls returned and to be taken seriously is even harder for me , as someone who speaks English , lives in a state with more services and has the incredible privilege of I Was taking time off from work to figure

this out . It felt nearly impossible for me . Mmm and I'm one of the demographic le lucky people . Yeah , you're white lady , I'm a white .

Almost all of us are starting out from a place of knowing nothing about any of this , yeah , and so while you are postpartum , in recovering physically from all of that , you are also Navigating systems and emotions and everybody telling you what a tragedy your child is . My child is not a tragedy , all of these things . It's really hard .

And so for Parents just knowing okay , it's not just me and I'm not alone in this and for clinicians , when parents come in there Kind of looking like zombies no , it is really hard for them , not necessarily because they're freaked out because their kid has X or Y or Z , but because they're trying to Get supports or learn what that is and they're just rung out

.

I'm sure you've encountered some at some point in time asking a doctor about Some social support system , some other system , and they're like I don't really know , let me send you over to the social worker or let me send you over to a case manager , because , honestly , we're not very well versed on quote-unquote the system either .

And so , on top of not necessarily having a specific diagnosis for your son , even though you have many , like you said , I don't have a specific , but we have many diagnoses and then having to navigate that like what , what does that do to ? What does that do to just kind of be Speed with which your child gets all of the things that he needs ? It's slow .

So everything can take a very long time . Everything often is urgent . Certainly feels urgent as a parent . I think parents need to understand that this is not the doctor's job to know all of these systems and what is available .

If the doctor does not know that , that is not necessarily their job . But what the doctor can do is just have one answer of . If someone comes to me saying what's the next step when I leave this office ?

Right , know what your state social service agency is for us , for zero to three and then above that , for individuals with developmental disabilities in California , that's the regional center .

If doctors know , for example , in California , to say I don't have the answers for where to go next , except that I can tell you that contacting your local regional center will get you there . So , contact your local regional center If physicians say I want to be able to head this off and to give parents a next step .

Know what the social service agency is , because it may be challenging to navigate but that is the next step .

You get what I'm saying .

So if someone is navigating through this , what are some of the services that they should be absolutely looking for ? Let's say between zero and three , and then maybe even you could take it a little bit past that . What are some of the services they should be looking for that may be the same among all the states ?

And so you need to look at where your child is developmentally and what services and supports they would need in order to get developmentally on track with their non-disabled peers . And just because your child has developmental delays doesn't necessarily mean they are or will be disabled . So that's a whole range of things .

So for us , because our son checks a lot of boxes , we accessed many services . His early intervention services included feeding therapy For him . He got a feeding tube at three months old and he still has the feeding tube . It's a great intervention that works for him and keeps him alive .

He's physically able to eat by mouth but chooses not to for a variety of reasons and motor issues . So feeding therapy is one . If your child isn't eating , it could be breastfeeding or bottle related . It could be actual food related . Speech and language therapy For the very younger children .

An infant might not get speech and language therapy , but if you're looking . If a speech and language therapist is looking at how their mouth is moving when they are eating , can give you a sense of motor function-wise what they might need .

There's physical therapy , which focuses on gross motor , ie the big picture , physical things like sitting , standing , walking , crawling , for example . There's occupational therapy , which focuses on the fine motor or the activities of daily living , ie hand use , holding things , toys when they're little , mom's hand pencils when they're older , whatever that looks like .

There are also different versions of child development or play therapy or interventions . You see that a lot in early intervention therapy when kids aren't necessarily engaging with the world or other people or their environment , of how to elicit play and it's very easy to just load up a kid on therapy , but play is the work and the job of childhood .

So all of this should look like play and shouldn't be miserable and terrible and shouldn't be work , and we would do a lot of our early intervention therapies at the park and outdoors and places where children would often be , and that is exciting and natural . As children get older , behavior therapy is something that can come into the mix .

That is something to really look at if you are trying to encourage the behaviors that make their child who they are , or if your child , for example , is neurodivergent or autistic and if you're thinking , maybe if we do enough therapy we can unautism our child , don't try and force your child to just comply with all grownups , because that sets up all kinds of

safety issues .

But even that is very difficult , right . Like I can imagine , like just the thought process of , well , how would I get my child to the park so that they can get the services that they need ? But that makes sense , right , like you can't have your child coming getting therapy and almost feeling like it's work , like bringing a lunch pail to work .

But especially when you have a kid who's disabled and who requires a lot more and different support , what systems can you put into place so that you can fall back on those systems ? And those days when you're like you know what ? I spent two hours playing with my kid at the park and watching the birds and all this insurance stuff didn't get done .

But there's a system for getting it done , so that I can spend time with my family and I can be a person and I can realize that my personal life is important . But getting these systems in place for yourself so that you have those to fall back on .

I need to be sure that the checks have gone through . And , looking at that system , I have the envelopes .

When I'm gonna mail all this paperwork in , I just I sit down with like fancy coffee or tea or a lot of chocolate and I literally just put stamps and return addresses on labels on the front of those envelopes and I have a stack of them in the folder so that when I finish the paperwork , the envelopes are already there .

And it's ready to go and I don't have to wait to get stamps , because if I wait that's gonna take me longer to get my money back .

That's real motivating to get that money back . And what is your motivation for doing this and how can I get this done right , but also as quickly as possible ? I'm really good at all this paperwork , but I don't enjoy it . It's not fun .

I'm really good at getting it done and scheduling the time to get it done so that I know now's not my time to scroll around on the internet , now's my time to do this and send that on its way . And part of it is starting the systems of saying what is one thing I can do and do that thing and that's it . Even that's all you can do today .

Is what is that one thing ?

In episode 176 , jamie Fleissner of Sefa Life Insurance explains why the best time to buy disability insurance is during your residency .

So when you're healthy , it's easier to acquire the coverage . Number two it's also less expensive because it's based on your age and your health . You're not getting younger or healthier over time , so you're at the ideal time . The earlier you get it and the younger you are , the less expensive it's going to be .

I think having a disabled child is difficult as it is . Navigating the system and you don't know anything is as difficult as it can be . What do you do ? What's your advice for those who are trying to navigate all of those different things but have a spouse who may be on a different page ?

Example our child went through early intervention , but I was initially saying the child will grow out of it and she was like , no , he needs to , we need to go the route of early intervention , we need some services . And I was like , ah , what's the big deal ? So maybe it may not even be a spouse , it could be a family member .

I think I was the only one on board with her A mom , a dad , other parts of your nuclear family or extended family are saying just .

What , how I start , is I'm making things easier on me and I'm very fortunate that my husband has been on board and there has been a clarity to having a child who so clearly was so delayed . From the beginning there was no doubt of whether or not he needed interventions , especially for kiddos with non-visible disabilities .

It can be really hard to convince yourself and or others that this is necessary . I always start from a place of I need to make this easier for me , and if my husband was saying , oh , he doesn't need feeding therapy , I think my approach would have been here's what I need .

I need to find a way to make this easier for me and my child and for all of us , and especially for the primary caregiver , which is very often the mom I think it's hard to argue with . I , as a mom , I am struggling . This will make it easier for me , so let's try this .

And you know what , if this doesn't work , if this is aversive to my kid or if it totally upends our schedule in a way that does not align with our family values , we will consider there is no harm in trying . Let's just see . And if people are really pushing back , you can say let's see how this goes . I am acting on the advice of my pediatrician .

So you just blame that pediatrician who's sending you to early intervention , like you know what , and we have an outstanding pediatrician who has held our hand every step of the way say I'm acting on her advice . Let's do these services for a month and then let's sit down and talk about how it's going .

Yeah , and I think accessing services , even if you know there's a disability at play or suspect or aren't ready to name it , that's okay . You do not need a diagnosis , you only need an evaluation that is showing a delay in order to access early intervention services . And you don't need to say I think our kid's real disabled .

You can say you know what , our pediatrician is advising this .

He has an older brother , he babbles and you know , he was babbling at the time as well , and so I was like I didn't realize that he actually wasn't saying words , that the words that were being said were being said by his older brother but not by him . That's really interesting .

Yeah , yeah , and you know , and , like you said , make it easier for yourself and for me . Honestly , instead of wondering , wondering like , okay , well , is he going to talk , it actually was easier for me to take action .

I had to feel like I was doing something , yes , and I was like , well , it can't harm him to do something about potentially helping him to speak .

So for me , that was actually making it easier on myself Although my husband will tell you my schedule was completely hectic , but it was in line with allowing me to feel like I'm doing something and it was action oriented and I just felt better about it .

It's almost like they're saying something to make themselves feel better , because they don't want to admit that maybe , possibly , something is going on . So if they see the child getting these therapy and services now , they have to admit . My grandchild , my nephew , my , you know , whatever it may be has some type of issue .

I don't know how to handle it and now my anxiety is going to play out . I think that could be difficult to navigate .

If you wanted to , you know , be able to do 100 push-ups by the end of this month , you might want to hire a personal trainer . No shame in that , no shame in that , you just do it . Yeah , I want my child to have an easier time communicating with his peers .

We're going to hire a personal trainer , but it's going to be called a speech therapist , so insurance .

Because insurance cannot and probably is not covering all of the services to the fullest extent .

Get to know that .

There's also the CHIP , the Children's Health Insurance Program , that is both federally and state-funded , so it is administered very differently within each state .

Right , and that is available to families who don't necessarily qualify for Medicare based on income but might , based on CHIP , your child's disability might qualify them for Medicare or CHIP if your finances do not qualify for them . It's really state by state .

So know what is available and can be covered through those and find out social service-wise what can be covered If you're like I don't know where

to start . I don't know any friends who know where to start .

Right , I did an experiment and I Googled Department of Developmental Services California , indiana and pulled up different states Department of Developmental Services and I just emailed random people and was like hey , I'm helping families who don't have the income to make a financial plan for their child's future , make a care plan for when they're not here to access

services . Where do we start ? And I heard back , and so don't be afraid of emailing your Department of Developmental Services or your Department of Health and Human Services and say hi , random person , I need help figuring this out .

And quite hopefully and I think , likely they'll get back to you and even if they don't have the answer , they can send you on a path that does . But it all starts with where are you financially ? Do you have an extra $50,000 a year to spend on equipment and therapies and alternative therapies ?

and all the things Right , or are you struggling to make ends meet and you don't know where this fits in ? You can also talk to hospital . Social workers are a great resource and there is no shame in even calling up the social worker before your visit at the hospital and say I don't have the $8 for the parking garage .

That is a barrier in my child's getting care . What can we do about that ? Hospital parking garages are so expensive . You know , right , I'll get it .

People are not looking down on you . They'll probably say good for you . I am so glad you called . We've got a program for that , Right .

A lot about that , right , I love that you do . Yes , yes , and you know Ne is very well known for hating whole life insurance . He's looking at me like what is she about to say ?

He's very well known for hating whole life insurance , but one of the things that we haven't really covered on this show , because he always does give the caveat not everyone needs whole life insurance . Some people do .

But that caveat that he often gives is if you think that your child is going to need care in the future beyond you know your living years that that might actually be a good idea . And you know , are you , where are you in terms of planning for your son's future , considering the number of disabilities that he has ?

Because it has some disadvantages , right , but like they've got great skin .

And families might say like , oh , we're good , my kid's not going to be adult for a while . He'll go live with Uncle Jimmy . Uncle Jimmy's awesome , that'll be great Time goes fast .

By the way , if you talk to Uncle Jimmy about that , because Uncle Jimmy might be like no , no , no , no , no , no , I'm going to Nepal and seeing what happens and we're like cool in Nepal , I love Nepal . So you need a plan .

It can be terrifying if you do not have success or guardians ie if something happens to you and or your partner who gets your child , either as children or as adults , who will not be able to live independently . Our son Aaron will not be able to live independently period , whatever form that takes . I want as he gets older .

He's 10 , he doesn't care about this stuff right now . He wants to watch Mickey Mouse . I don't think you're 10 , that's what you should want . But as he gets older , we will review these plans with him and make sure that it is with his wishes and , to the extent that he is interested and able , will participate in the care planning . Back to your finances .

If you are not here to make income to access the services , whatever that is , what will your child need and whether that's right now or whether that's when your child is 50 and you're gone or not making an income and you really do need to think about and talk about a . They're called special needs financial planners usually .

Sometimes there's a movement towards calling them disability planners , which is great .

But the fastest Google is special needs financial planner and you need to speak with someone who specifically knows the ins and outs of support for individuals with disability , because they will likely be able to speak to future housing options , whether that is with you in a group home , at home , with support , whatever that is .

They will also be able to speak to in your state . What is the amount of money that this person can have in their name when they turn 18 and not lose government benefits ? It's around $2,000 . That is nothing . Some people spend that in a month , especially if you are paying for caregivers . You might spend that in a week .

You need to know how to have finances in place so that if Aunt Sally dies and leaves your child , a million dollars if that goes into your child's name . Does your child lose their housing immediately ? And child I'm saying it could be a 35 year old , but my boys will always be my children , but they'll be grown ups and you need to talk to someone .

It's different in every state . It is a mess , but it's figure outable of how things should be set up . They're called special needs trusts . We're trying to move away from the term special needs because people with disabilities have told us to do so and that's a whole other thing . So disability , but they're called special needs trusts .

So do you need a special needs trust ? Do you need a special savings account ? Do you need something that you can change the terms of a future care plan ? Do you need something locked in place ? Do you need to talk about all the details with anyone you have listed as a guardian who might be caring for your children now or later ?

You need to speak with someone who knows the specifics of this and is not a financial planner just for families without disability factored in , because your child absolutely could lose all their services .

But it is often done based on your assets , based on how much you have . So if you're a gazillionaire , yeah , it's going to be pricey , but it's fine , you don't care Money means nothing to you If you say I really don't have a lot of money , but I need to create a will start with that . Also , back to the what's going to make your life easier .

I bet you'll sleep better once you know . if something happens to you . Here's what it is . How do you determine if you need a certain type of life insurance , or how much life insurance do you need ?

You look at what expenses will need to be covered when you are no longer here for your child or children , and when one becomes an adult , is this one going to be able to support themselves ? This one is not .

What finances will they need in place and work backwards from that number of what the needs are to determine and then talk to your planner about insurance and someone who is an expert in insurance because they can speak to it . If you have no insurance , you might not sleep as well at night .

I mean , I think all of these things you know , when we think about disabilities and just kind of what it takes to care for someone with a disability , I don't know that people understand the gamut of things that you actually have to consider , right From the diagnosis to the care plans , to the equipment , to the finances of paying for all of that , but then also

thinking about the future and what happens , especially if it is a dependent or a child who has that disability , and what happens when you're not there . So you know , I think definitely your book is one that is very much needed for lots of people out there , including doctors . Like I said , we don't know how to navigate this level of a system .