February 13, 2025 • 12 mins
In this episode, we follow Rosa and Jorge Sr. as they navigate the long and exhausting journey to secure adult day services for their son, Jo Jo. After years of waiting for a Medicaid waiver, the family finally gets the opportunity for Jo Jo to attend The Bridge Center. But what should be a moment of relief is instead filled with uncertainty, exhaustion, and emotional weight. As Jo Jo embarks on his first day, Rosa struggles with the unexpected emotions of letting go. This episode highlights the often-overlooked realities of caregiving, the bureaucracy families face, and the emotional impact of major transitions.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome back to Take Care Time,the Tales and Exhales of
(00:02):
Caregivers.
I'm your host, Beverly Nance,and I can't believe I'm saying
this, but here we are kickingoff Season 2.
Woo! I guess I'm really apodcaster.
First and foremost, I want tothank every single one of you
for listening, supporting, andsharing your stories with me,
(00:23):
your questions, story requests.
And words of encouragementthroughout Season 1 helped shape
this podcast into a truecommunity, and I am grateful.
As we dive into this new season,I'm excited to bring more
powerful stories that resonate,challenge, and inspire you.
And also entertain you as well.
(00:45):
And we're starting strong with atopic close to my heart, which
is Adult Day Programs for Adultswith Disabilities.
These programs are meant to be alifeline for families like mine,
providing structure and supportfor adults with disabilities.
But finding the right programcan be a journey filled with
(01:06):
both hope and heartbreak.
So, come on, let's get intothis.
This is the story of George,affectionately known as JoJo,
and his family as they navigatethe complicated emotional
process of securing the care heneeds.
It's a story of resilience,advocacy, and a quest to find
(01:28):
the right place.
Um, Uh, transcript.
(01:59):
The Morales family lives in amodest home on the outskirts of
Atlanta, Georgia.
George Morales Sr., a longdistance truck driver, spends
most of his days on the roadhauling goods across the
country.
His wife, Rosa, she sometimesworks part time at a local
retail store.
She juggles her shifts aroundcaring for her 25 year old son,
(02:22):
Jojo.
Jojo has autism and significantsupport needs.
Jojo is the heart of the family.
He's nonverbal, but communicatesthrough gestures and a few signs
he learned during his schoolyears.
He loves music, particularly theranchera songs his dad plays on
the weekends when dad's home.
(02:43):
Jojo's favorite thing to do issit in the backyard, watching
the trees sway in the wind, andhumming to himself.
Despite his challenges, he's agentle soul, deeply connected to
his parents.
But, life isn't easy for theMorales family.
Rosa describes their day as aconstant balancing act.
(03:04):
She wakes up early to prepareJojo's meals.
Help him with his hygiene andensure he has some structured
activities.
When George Sr.
is home, he pitches in, but hisjob keeps him away from his
family for long stretches.
The couple rarely has timetogether, let alone time for
themselves.
(03:24):
We're doing our best, Rosa says,but sometimes it feels like
we're just surviving.
JoJo's childhood was marked by amix of joy and worry.
Rosa remembers when he was ababy, how he giggled
uncontrollably whenever she sangto him.
But as he grew older, she beganto notice the differences.
(03:45):
He didn't speak his first wordsand he avoided eye contact.
At two years old, he wasdiagnosed with autism.
The Morales family threwthemselves into supporting JoJo.
Rosa attended every parenttraining offered by the school
district, learning strategies tohelp him communicate and manage
sensory overload, and GeorgeJr., despite his grueling
(04:07):
schedule, made it a point toattend JoJo's individualized
education program, known as IEPmeetings.
I wanted them to know we'repaying attention, George Sr.
says.
No one's going to ignore my son.
JoJo's years in school were amix of progress and setbacks.
He thrived in a structuredclassroom with a patient
(04:30):
teacher.
But transitions were alwayshard.
Rosa recalls one field tripwhere Jojo became so overwhelmed
that he bolted into the parkinglot.
It was a terrifying moment thatreinforced how much supervision
he needed despite the bad days.
There were good days for jojo,and at the age of 22, he aged
(04:50):
out of public schools, but nowwhat?
It was at the recommendation ofJoJo's last teacher that Rosa
and George applied for theMedicaid waiver for JoJo.
Now, before we dive deeper intoJoJo's story, let's take a
moment to understand Medicaidwaivers, which are critical in
(05:11):
providing services forindividuals with disabilities.
In Georgia, the Now/Comp waiversShort for New Option Waiver and
Comprehensive Support Waiver aredesigned to help individuals
with developmental andintellectual disabilities live
more independently in theircommunities.
These waivers cover serviceslike adult day programs, Respite
(05:34):
care, personal support, and jobcoaching, community access
support, community livingsupport, and make it possible
for families to access the carethey need without
institutionalizing their lovedone.
Let me say it again, withoutinstitutionalizing their loved
(05:55):
ones.
However, due to limited fundingand high demand, thousands of
individuals remain on thewaiting list for years before
receiving approval.
For families like the Moralesfamily, this delay can be
agonizing.
Without support waivers, manyparents become full time
caregivers with limitedresources, while adults with
(06:17):
disabilities like Jojo faceisolation and a lack of
meaningful engagement.
This system leaves families inlimbo, waiting for a call that
could change everything.
It felt like we were shoutinginto a void, Rosa says.
Every time I called to check onthe application, they'd say the
same thing.
(06:38):
You're still on the list.
You're still on the list.
Without the waiver, the Moralesfamily was left to piece
together support.
Rosa took on more hours at workto cover private therapies, but
it just wasn't sustainable.
Jojo spent most of his days athome, restless and isolated.
(06:58):
For George Sr., the situationwas heartbreaking.
I see him sitting there, dayafter day, with nothing to do.
He deserves better than this.
He deserves more than this.
After three years of waiting,the call finally came.
JoJo's waiver application hadbeen approved.
Rosa cried tears of relief,knowing this was their chance to
(07:21):
find a program that could giveJoJo structure and purpose.
But the relief was short lived.
As Rosa and George beganvisiting day programs, they
realized the decision wasn'tgoing to be simple.
Some places felt more likewarehouses than programs, Rosa
says.
The staff seemed overwhelmed andthe participants just sat around
doing nothing.
(07:42):
The search was exhausting, butRosa refused to settle.
After weeks of visits andinterviews, They found the
Bridge Center, a program thatpromised individualized care and
engaging activities.
It wasn't perfect, but it feltlike the best option available.
Rosa filled out the paperworkand waited.
And finally, JoJo was scheduledfor his first day.
(08:04):
On his first day, Rosa packs hislunch.
and double checks his backpack.
Her heart filled with a mix ofhope and apprehension.
George Sr.
hugs Jojo tightly before headingback on the road.
He whispered in his ear, you'vegot this mijo.
For years Rosa had envisionedwhat this moment might feel
(08:25):
like.
The first day, JoJo would besomewhere safe, engaged, and
cared for, giving her time tobreathe.
She thought she'd celebrate.
Maybe she'd take a long shower,enjoy a hot cup of coffee, or
even go back to sleep for anhour.
But as the van pulled away, shedidn't feel like celebrating.
(08:45):
She felt And exhale one long anddeep like releasing years of
tension that she hadn't realizedshe was carrying her hands
trembled slightly as she closedthe door behind her.
The house usually filled withJojo's soft humming.
Was eerily quiet.
(09:06):
She stood in the kitchen,staring at the coffee pot, but
didn't make a cup.
Instead, she sat down at thetable.
Exhaustion washed over her likea wave.
For the first time in years, shewasn't immediately responsible
for someone else's needs.
And yet, instead of feelingfree, she felt lost.
(09:27):
Who was she without the constantcaregiving?
What did she even like to doanymore?
Hours passed, but Rosa hardlynoticed.
She scrolled through oldpictures on her phone.
Jojo, as a baby.
Jojo at his graduation from highschool.
Silly moments with his dad.
(09:49):
She cried, not just from therelief, but from the weight of
the journey it had taken to gethere.
When she finally glanced at theclock, she realized it was
almost time for Jojo to comehome.
She hadn't done a single thingshe planned, but somehow, she
had done exactly what sheneeded.
Processed, grieved, and exhaled.
(10:12):
In our next episode of TheBridge Center, JoJo's first day
brings unexpected challenges.
Rosa and George quickly realizethat even the best programs have
growing pains, and JoJo'stransition is anything but
smooth.
Will the bridge center beeverything they hope for, or
will it reveal cracks theyhadn't anticipated?
(10:32):
Join me as we explore therealities of day programs beyond
the brochures and promises touncover what really makes a
place the right fit.
Caring for a loved one is a fulltime job, but that doesn't mean
you have to do it without abreak.
The Take Care Time Respite Boxis designed just for caregivers
(10:53):
like you, because you deserve abreak, too.
You deserve care, too.
Each box is thoroughly curatedwith self care essentials to
help you recharge, includingsoothing teas, relaxation tools,
and small delights that bringcomfort in the midst of
caregiving.
Give yourself permission topause.
Visit TakeCareTime.
com to order your Take Care TimeRespite Box today.
(11:16):
Because caring for yourself isjust as important as taking care
of others.
Please note that this episodefeatures re enactments and
dramatized details.
While in most cases, the exactverbatim dialogue may not be
known, all dramatizations aregrounded in thorough research
and crafted to honor the storiesshared.
(11:38):
To respect the privacy andconfidentiality of individuals
involved, Names and someidentifying details have been
changed.
Do you have a caregiving storythat deserves to be told?
I'd love to hear from you.
Whether it's about navigatingthe system, finding the right
support, overcoming a personalchallenge, hiring the right
(11:59):
person, or even firing the wrongperson, your experiences can
help inspire and educate others.
If you'd like to share yourstory on Take Care of Time, the
Tales and Exhales of Caregivers,email me at
podcast@takecaretime.com yourjourney matters and together we
can bring more awareness to therealities of caregiving.
(12:21):
Until next week, take care.
Um, Uh, transcript.
Welcome back to Take Care Time,the Tales and Exhales of
(00:02):
Caregivers.
I'm your host, Beverly Nance,and I can't believe I'm saying
this, but here we are kickingoff Season 2.
Woo! I guess I'm really apodcaster.
First and foremost, I want tothank every single one of you
for listening, supporting, andsharing your stories with me,
(00:23):
your questions, story requests.
And words of encouragementthroughout Season 1 helped shape
this podcast into a truecommunity, and I am grateful.
As we dive into this new season,I'm excited to bring more
powerful stories that resonate,challenge, and inspire you.
And also entertain you as well.
(00:45):
And we're starting strong with atopic close to my heart, which
is Adult Day Programs for Adultswith Disabilities.
These programs are meant to be alifeline for families like mine,
providing structure and supportfor adults with disabilities.
But finding the right programcan be a journey filled with
(01:06):
both hope and heartbreak.
So, come on, let's get intothis.
This is the story of George,affectionately known as JoJo,
and his family as they navigatethe complicated emotional
process of securing the care heneeds.
It's a story of resilience,advocacy, and a quest to find
(01:28):
the right place.
Um, Uh, transcript.
(01:59):
The Morales family lives in amodest home on the outskirts of
Atlanta, Georgia.
George Morales Sr., a longdistance truck driver, spends
most of his days on the roadhauling goods across the
country.
His wife, Rosa, she sometimesworks part time at a local
retail store.
She juggles her shifts aroundcaring for her 25 year old son,
(02:22):
Jojo.
Jojo has autism and significantsupport needs.
Jojo is the heart of the family.
He's nonverbal, but communicatesthrough gestures and a few signs
he learned during his schoolyears.
He loves music, particularly theranchera songs his dad plays on
the weekends when dad's home.
(02:43):
Jojo's favorite thing to do issit in the backyard, watching
the trees sway in the wind, andhumming to himself.
Despite his challenges, he's agentle soul, deeply connected to
his parents.
But, life isn't easy for theMorales family.
Rosa describes their day as aconstant balancing act.
(03:04):
She wakes up early to prepareJojo's meals.
Help him with his hygiene andensure he has some structured
activities.
When George Sr.
is home, he pitches in, but hisjob keeps him away from his
family for long stretches.
The couple rarely has timetogether, let alone time for
themselves.
(03:24):
We're doing our best, Rosa says,but sometimes it feels like
we're just surviving.
JoJo's childhood was marked by amix of joy and worry.
Rosa remembers when he was ababy, how he giggled
uncontrollably whenever she sangto him.
But as he grew older, she beganto notice the differences.
(03:45):
He didn't speak his first wordsand he avoided eye contact.
At two years old, he wasdiagnosed with autism.
The Morales family threwthemselves into supporting JoJo.
Rosa attended every parenttraining offered by the school
district, learning strategies tohelp him communicate and manage
sensory overload, and GeorgeJr., despite his grueling
(04:07):
schedule, made it a point toattend JoJo's individualized
education program, known as IEPmeetings.
I wanted them to know we'repaying attention, George Sr.
says.
No one's going to ignore my son.
JoJo's years in school were amix of progress and setbacks.
He thrived in a structuredclassroom with a patient
(04:30):
teacher.
But transitions were alwayshard.
Rosa recalls one field tripwhere Jojo became so overwhelmed
that he bolted into the parkinglot.
It was a terrifying moment thatreinforced how much supervision
he needed despite the bad days.
There were good days for jojo,and at the age of 22, he aged
(04:50):
out of public schools, but nowwhat?
It was at the recommendation ofJoJo's last teacher that Rosa
and George applied for theMedicaid waiver for JoJo.
Now, before we dive deeper intoJoJo's story, let's take a
moment to understand Medicaidwaivers, which are critical in
(05:11):
providing services forindividuals with disabilities.
In Georgia, the Now/Comp waiversShort for New Option Waiver and
Comprehensive Support Waiver aredesigned to help individuals
with developmental andintellectual disabilities live
more independently in theircommunities.
These waivers cover serviceslike adult day programs, Respite
(05:34):
care, personal support, and jobcoaching, community access
support, community livingsupport, and make it possible
for families to access the carethey need without
institutionalizing their lovedone.
Let me say it again, withoutinstitutionalizing their loved
(05:55):
ones.
However, due to limited fundingand high demand, thousands of
individuals remain on thewaiting list for years before
receiving approval.
For families like the Moralesfamily, this delay can be
agonizing.
Without support waivers, manyparents become full time
caregivers with limitedresources, while adults with
(06:17):
disabilities like Jojo faceisolation and a lack of
meaningful engagement.
This system leaves families inlimbo, waiting for a call that
could change everything.
It felt like we were shoutinginto a void, Rosa says.
Every time I called to check onthe application, they'd say the
same thing.
(06:38):
You're still on the list.
You're still on the list.
Without the waiver, the Moralesfamily was left to piece
together support.
Rosa took on more hours at workto cover private therapies, but
it just wasn't sustainable.
Jojo spent most of his days athome, restless and isolated.
(06:58):
For George Sr., the situationwas heartbreaking.
I see him sitting there, dayafter day, with nothing to do.
He deserves better than this.
He deserves more than this.
After three years of waiting,the call finally came.
JoJo's waiver application hadbeen approved.
Rosa cried tears of relief,knowing this was their chance to
(07:21):
find a program that could giveJoJo structure and purpose.
But the relief was short lived.
As Rosa and George beganvisiting day programs, they
realized the decision wasn'tgoing to be simple.
Some places felt more likewarehouses than programs, Rosa
says.
The staff seemed overwhelmed andthe participants just sat around
doing nothing.
(07:42):
The search was exhausting, butRosa refused to settle.
After weeks of visits andinterviews, They found the
Bridge Center, a program thatpromised individualized care and
engaging activities.
It wasn't perfect, but it feltlike the best option available.
Rosa filled out the paperworkand waited.
And finally, JoJo was scheduledfor his first day.
(08:04):
On his first day, Rosa packs hislunch.
and double checks his backpack.
Her heart filled with a mix ofhope and apprehension.
George Sr.
hugs Jojo tightly before headingback on the road.
He whispered in his ear, you'vegot this mijo.
For years Rosa had envisionedwhat this moment might feel
(08:25):
like.
The first day, JoJo would besomewhere safe, engaged, and
cared for, giving her time tobreathe.
She thought she'd celebrate.
Maybe she'd take a long shower,enjoy a hot cup of coffee, or
even go back to sleep for anhour.
But as the van pulled away, shedidn't feel like celebrating.
(08:45):
She felt And exhale one long anddeep like releasing years of
tension that she hadn't realizedshe was carrying her hands
trembled slightly as she closedthe door behind her.
The house usually filled withJojo's soft humming.
Was eerily quiet.
(09:06):
She stood in the kitchen,staring at the coffee pot, but
didn't make a cup.
Instead, she sat down at thetable.
Exhaustion washed over her likea wave.
For the first time in years, shewasn't immediately responsible
for someone else's needs.
And yet, instead of feelingfree, she felt lost.
(09:27):
Who was she without the constantcaregiving?
What did she even like to doanymore?
Hours passed, but Rosa hardlynoticed.
She scrolled through oldpictures on her phone.
Jojo, as a baby.
Jojo at his graduation from highschool.
Silly moments with his dad.
(09:49):
She cried, not just from therelief, but from the weight of
the journey it had taken to gethere.
When she finally glanced at theclock, she realized it was
almost time for Jojo to comehome.
She hadn't done a single thingshe planned, but somehow, she
had done exactly what sheneeded.
Processed, grieved, and exhaled.
(10:12):
In our next episode of TheBridge Center, JoJo's first day
brings unexpected challenges.
Rosa and George quickly realizethat even the best programs have
growing pains, and JoJo'stransition is anything but
smooth.
Will the bridge center beeverything they hope for, or
will it reveal cracks theyhadn't anticipated?
(10:32):
Join me as we explore therealities of day programs beyond
the brochures and promises touncover what really makes a
place the right fit.
Caring for a loved one is a fulltime job, but that doesn't mean
you have to do it without abreak.
The Take Care Time Respite Boxis designed just for caregivers
(10:53):
like you, because you deserve abreak, too.
You deserve care, too.
Each box is thoroughly curatedwith self care essentials to
help you recharge, includingsoothing teas, relaxation tools,
and small delights that bringcomfort in the midst of
caregiving.
Give yourself permission topause.
Visit TakeCareTime.
com to order your Take Care TimeRespite Box today.
(11:16):
Because caring for yourself isjust as important as taking care
of others.
Please note that this episodefeatures re enactments and
dramatized details.
While in most cases, the exactverbatim dialogue may not be
known, all dramatizations aregrounded in thorough research
and crafted to honor the storiesshared.
(11:38):
To respect the privacy andconfidentiality of individuals
involved, Names and someidentifying details have been
changed.
Do you have a caregiving storythat deserves to be told?
I'd love to hear from you.
Whether it's about navigatingthe system, finding the right
support, overcoming a personalchallenge, hiring the right
(11:59):
person, or even firing the wrongperson, your experiences can
help inspire and educate others.
If you'd like to share yourstory on Take Care of Time, the
Tales and Exhales of Caregivers,email me at
podcast@takecaretime.com yourjourney matters and together we
can bring more awareness to therealities of caregiving.
(12:21):
Until next week, take care.
Um, Uh, transcript.
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