Fighting for Care
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Hi, I'm Megan, and I've got a new podcast I think you're going to love. It's called Confessions of a Female Founder, a show where I chat with female entrepreneurs and friends about the sleepless nights, the lessons learned, and the laser focus that got them to where they are today. And through it all, I'm building a business of my own and getting all sorts of practical advice along the way that I'm so excited to share with you.

Confessions of a Female Founder is out now. Listen wherever you get your podcasts. This show is presented by the Commonwealth Fund, a nonprofit foundation whose mission is to promote a high-performing, equitable healthcare system.

The Commonwealth Fund supports research to improve health care policy and practice and has a long history of exploring what the U.S. can learn from the best health care around the world to do better here at home, especially for people of color, people with low income, and those who are uninsured. To learn more, visit CommonwealthFund.org. Lemonada.

When you know you're going to be a mother, there's the book that says, you know, what to expect when you're expecting or what to expect in the first years. There isn't a book that says what to expect when you have a special needs child. You know what I mean? This is Renee Hanania. She cares for her 22-year-old son, Brandon, whose disability requires round-the-clock care. Without question, Renee is his biggest advocate.

I will go to the ends of the earth for my son. I might be 4'10 and weigh 79 pounds, but by golly, you know, with my heels and my mouth, I'm ready to throw a punch. I'm telling you. This is Uncared For. I'm your host, Suchan Pak.

So far in this series, we've been looking at what it means to care for an older loved one. In this episode, we're shifting the focus to another kind of caregiving: caring for a child with a disability.

In the United States, over 3 million children under 18 are living with a disability. Much of that caregiving falls on the shoulders of their families. And that need for care doesn't just stop when they turn 18. Many children with disabilities need care from their families into adulthood too, like Renee's son, Brandon. Meeting Brandon's complex medical needs is a challenge for Renee and her family.

If that wasn't hard enough, she's also battling her own health concern, stage four breast cancer. Today, how can a caregiver care for her loved ones and herself all while navigating the maze of Medicaid access? I'd like to start by learning a bit more about your son, Brandon. Tell me, you know, what are some of his favorite things? What does he enjoy? What's his personality like? Anything about him.

So we call him Brandon the Brave because he's a very brave young man. To this day, he still loves to play the Wii. That is the only thing that he somewhat consistently remembers how to do. He loves to go for car rides. He loves to be outdoors. My little one, Jolie, she keeps him busy. So he's constantly following her with his eyes because, you know, Brandon is nonverbal.

So we don't know exactly what he understands and what he doesn't. It's a little tricky. But he is my miracle son. He's my miracle child. Can you tell me about Brandon as a young child before his diagnosis? How would you describe him?

Brandon was a healthy child up until he was eight years old. So we had eight years of somewhat of a normal life. He was very popular. Everybody loved Brandon. Brandon's favorite sports were karate, soccer. He loved to be in the pool, swimming, dancing. And he was definitely...

You know, the ladies man, I mean, he was like, I have to do my hair and I need gel and I need to spray and need Axe spray and I need cologne. And, you know, and one of our neighbors down the street, Lauren, you know, he was like, I'm going to ask her to be my girlfriend. But I'm like, you already have five girlfriends. He's like, no, she's going to be the main girl.

You know, so that's Brandon. You know, Brandon loved to dress up and being Iron Man, Spider-Man. He would go around the neighborhood on his bicycle, scooter, dressed up in different, you know, superheroes. You know, but he was full of... Big personality. Big personality. Big personality. Absolutely. So he was, you know...

Pretty typical as a child, you know, up until about eight years old. What happened? It did it happen overnight? Was it kind of like you started to notice some things? Can you kind of tell me about when you started to feel like, wait, something's not right? So we were actually traveling overseas at that time. I was visiting my family in Jordan and Amman, Jordan. We were there about a month into our stay.

We actually had went to the Dead Sea and he was so excited about that, being at the Dead Sea and swimming and dancing and the DJ and whatnot. And about, I would say about a couple of days after that, Brandon developed

a fever. He wasn't, he just wasn't feeling well. And it wasn't the first time that he got sick. But the only thing with this time was he was very sort of tired all the time and he wanted to sleep. So I had taken him to the doctor. They told me that, you know, he has some sort of

So they put him on antibiotics that made him sick. And then I'd say about seven days from the initial onset of what we thought was a virus, Brandon had his first seizure. He had woken up from a nap and all of a sudden he just stopped talking and he started seizing. We went to the hospital. They did a plethora of tests.

medical tests, which all came back negative. But yet this little boy was seizing. And we didn't know why the doctors were sort of dumbfounded. They've never seen anything like this before. That next morning that Brandon had woken up and we were in the ICU and he gets up and says, mom, where am I? And I said, we're in the hospital. And he went back into bed

And he told me that he loved me and that he wanted me to stay next to him. And then he went into another seizure after seizure after seizure. And it sort of spiraled out of control. He was medevaced from Jordan to Germany. He was medically intubated in a medically induced coma for two weeks because his brain was literally on fire. And then when he woke up, he woke up a different child.

He couldn't walk. He couldn't talk. He was withdrawing from a lot of the medication that they put him on. Yeah, it was really, really horrible. Yeah. I mean, I'm sitting here listening. Obviously, I've got two kids of my own. So it sounds like while it did take some time for him to go from, oh, he's got a fever to suddenly saying,

He's in a medical induced coma while that took some time, but it almost sounds like your life changed overnight. Oh, is that accurate? Do you feel that way? Yes. Oh yes. It changed.

overnight for the entire family, my mother, my father, my brother, my ex-husband, Rachel, his little sister. We couldn't take the fact that Brandon would never return like we knew he was going to be. And it was very difficult for us all, which ultimately broke our family. When you have a healthy child, you don't go to the doctor so much, right? You

You go when you need to go for school physicals and whatnot. But when you enter that realm of a world of doctors, specialists, the countless...

needle pricking, trying to get a vein, MRIs, PET scans, seizure medications, seizure side effects, manic episodes because of the seizure medication. You are in a whole different world. When we come back, Renee breaks down how her family fights to get Brandon the care he needs to survive. We make decisions for Brandon.

We talk to the doctors for Brandon. We fight the doctors for Brandon. We wreak havoc for Brandon.

Voices matter. Stories create change and perspectives are powerful. That's what the team at the Commonwealth Fund believes. And it's why they make space for the stories of people who have been affected by the inequities in our health care system and for the voices of those working to root out racism in health care. Their Advancing Health Equity Instagram account shares news, lifts perspectives and publishes data on the state of health equity in the U.S.,

Follow them on Instagram at Advancing Health Equity to keep a pulse on one of the most important issues at hand right now.

I'm Hasan Minhaj, and I have been lying to you. I only pretended to be a comedian so I could trick important people into coming on my podcast, Hasan Minhaj Doesn't Know, to ask them the tough questions that real journalists are way too afraid to ask. People like Senator Elizabeth Warren. Is America too dumb for democracy? Outrageous. Parenting expert Dr. Becky.

How do you skip consequences without raising a psychopath? It's a good question. Listen to Hasan Minhaj Doesn't Know from Lemonada Media, wherever you get your podcasts. So today, as we're sitting here, what is Brandon's diagnosis? I want to get that really clear. And what kind of care does he need these days? In essence, Brandon is...

is diagnosed with a mitochondrial disease that affects him neurologically. I am a carrier of a mutation that Brandon has from me and his father also is a carrier of a mutation which is like so extremely rare that this happened. Those two mutations

Plus, a third mutation caused the catastrophic form of mitochondrial disease, which is called Alper's syndrome.

So Brandon's disease manifests in intractable epilepsy, which means it's resistant to all and any seizure medications, no matter how many you put them on, whatever cocktail of medication you put them on, it doesn't work. We've tried them all. So Brandon suffers from seizures daily. Brandon has severe colitis. Brandon is nonverbal.

He cannot wash himself. He cannot brush his teeth. He cannot go to the bathroom by himself. We are his brain. We are his executive function.

We actually just had to go through the guardianship, sort of the legal guardianship realm of because he cannot act on his own or make any medical decisions. We are now four of us. My mother, my father, my brother and myself are his legal guardians. We fight through the daily obstacles of, you know, Medicaid, TRICARE, all this stuff for Brandon.

Brandon is like a newborn baby. Yeah. Somebody needs to be with him at every...

second of the day. I mean, you said it when you said you're his brain. Yes. I mean, that, that is about as, you know, if you just break, if you sit down for 10 minutes and you break down, right, what it is your brain does for you, then you understand the level of care that, that you're giving Brandon and what Brandon needs. And it's so complex. It's so around the clock. And

And I want to talk about this care village that you've sort of alluded to, your family. Who is part of this care system that surrounds Brandon? So it's myself. It's my mother, my father, my brother, Pamela, who is Brandon's full-time nurse and definitely got sent. Jolie.

And God, you know, we, we all, uh, do everything together. When you have a special needs child, it 1 million percent requires a village together, working together to ensure the quality of life, the love and everything that he needs. Um,

So Pamela has been Brandon's full-time nurse for five years now. And Pamela is just attached to Brandon as Brandon is attached to Pamela. So on her days off, while he cannot tell us, but he's constantly looking for her, you know, and on her days off, she's constantly always asking about him.

I mean, when she walks in the front door and she's like, oh, there's my Brandon, her face lights up and so does he. She keeps him busy from morning until she puts him to sleep, whether it might be working on puzzles together, watching educational videos, playing games, putting him on his

you know, bicycle, taking him for walks, going to the park. I mean, she's constantly engaging him throughout the day. My dad is the barber, the dentist, the neurologist. So yeah, it encompasses so many different people in different uniforms, if you will.

Along with Brandon and her youngest daughter, Jolie, Renee lives with her parents. They cook meals, give Brandon his medication, and fill in with care where they can. Renee needs them, along with nurse Pamela, because now she's also dealing with treatments for her stage four breast cancer.

Okay. I have to talk about this. I mean, on top of all of this, this is your second time around with cancer yourself. I mean, I just, can you take me back to that moment? You got the first diagnosis. What was it in 2019? Yes. So I had given birth to my, my little one and, um,

you know, I was breastfeeding her and I noticed, you know, a lump in my chest and lo and behold, I kept quiet about it. And finally I decided, you know what, let me go to the doctor and

right then and there, man, the radiologist came in and he was like, I've been doing this for more than 40 years. And I am sure that you have cancer and it is spread to your lymph nodes. And that just slapped me right in the face. I'm like, are you, wait a minute, isn't there something called a biopsy or whatever? So that, that kind of, uh, took its toll. And, um,

Then I, you know, had to have a double mastectomy and, you know, they told me I need chemo and radiation and I declined all of that. I found out a year ago that the cancer had returned and it spread into my neck. And this time around, I decided that I needed to do chemo because I was diagnosed as a stage four at that present moment.

And so I'm on a plethora of medication, which has really affected me. So I can understand what Brandon feels. Renee told me earlier she's going to try to kick cancer's ass for as long as she can. It's obvious she's a fighter, but stage four cancer is serious. So Renee has had to lean on others like her community. They raised money for her to get treatment that insurance wouldn't cover.

And if anything were to happen to her, Renee isn't Brandon's only caregiver. Renee's parents and her brother are also his legal guardians who can make medical decisions and communicate with his insurance provider. For now, though, Renee handles all of Brandon's paperwork, whether that's keeping track of costs or fighting for insurance coverage. I asked her about how she manages all of this.

In this show, we talk so much about health care and taking care of the people in our lives. And the financial cost of that is so intrinsically tied to someone's well-being, especially in this country. So if you can, what does Brandon's care cost? You know, let's say on a monthly basis, how are you paying for it? Can you kind of walk me through some of the finances?

So Brandon has Humana Military as his primary insurance. And then his secondary insurance is Medicaid, which is simply long-term care, simply health care. And they are a piece of work. Whatever is not covered, it comes out of our pocket. And that varies month to month.

Every year, Brandon has to go through a renewal of health care through the state. Every year, it should automatically renew. But last summer, that's not what happened. We were traveling to Canada because Brandon, he was receiving a trial study medication through the Canadian government at Children's Hospital of Montreal.

And I get a phone call from Simply Healthcare telling us that Brandon's Medicaid is going to be dropped on June 30th. Brandon's Medicaid coverage was dropped and was automatically switched to a long-term Medicaid plan for adults. Renee says his provider told her that since he was 21 years old, they were limiting his coverage. She was stunned.

According to reporting in the Tampa Bay Times, the state determined they'd only cover the cost of half of the adult diapers and bedpads Brandon needed. And even worse, on this new plan, Renee's family couldn't afford to keep Brandon's longtime nurse, Pamela. It was disastrous.

All of the things that Brandon requires, oxygen, yada, yada, yada. We're not going to get that. Okay. And I'm scrambling on the phone with the primary care doctor, case manager. We're trying to figure this out.

And I get back to Florida and I said, you know what? I'm going to go down to the Medicaid office. OK, that was literally a circus in itself. Everybody's standing outside because Florida decided, you know, the pandemic is over. So everyone that got emergency Medicaid is going to be dropped. And they were dropping people left and right.

And my son was one of them. What Renee's talking about is a larger Medicaid disenrollment that happened across the state, impacting hundreds of thousands of residents. And it wasn't just Florida. After COVID-era public health measures ended, all states re-evaluated who was eligible for Medicaid. And as a result, so many people ended up losing coverage. For Renee, that meant it was time to go to bat for her son.

So we're waiting on this long line outside of Medicaid, of the Medicaid office. And when I say a long line, I'm talking hundreds of people that have disabilities that are waiting outside in 110 degree weather. And we're being told by the security guard, you know, to stand in a straight line. You can't move. You can't this. You can't go inside. And I said, you know what? No, I don't think so. So.

I was like, I walked right in past him and I just started filming on my phone. You know, I called the news. I had the news agencies outside. I had the Tampa Bay times. We just bombarded them. Finally, you know, I spoke to a supervisor. I said, I want my son's Medicaid to be renewed and to be renewed indefinitely. And he,

I had to fight them. I had to, I had to fight the way to get it reinstated. And it, I mean, legalities, lawyers, it took so much out of me because I had just found out that I was dealing with my second bout of cancer and stress is not good for me to deal with all that stuff. Yeah.

According to the Tampa Bay Times, about a month after receiving the letter disqualifying Brandon from his original Medicaid coverage, Renee got a phone call. It was the Department of Children and Families. They told her it had all been a misunderstanding. Brandon could have his long-term coverage again. It was a huge relief, of course, but it was also so much time lost and so much time spent worrying.

Gaps in coverage like this can be devastating. One way around it, continuous enrollment for children with disabilities who are on Medicaid. This would give children consistent access to the care they need, even in the face of lost mail or paperwork mistakes. For Renee, Brandon's gap in coverage came at such a high cost, financially and emotionally. She says it was just another example of the system's brokenness.

It's a constant battle with, you know, providing documents that insurance companies lose. It's a constant battle trying to make sure that they have what they need. And who suffers? My son. And that's unacceptable. Not everybody is a whistle like I am. So what about those other families that can't do that because they just don't have the energy to do that?

After the break, Renee shares her advice to other caregivers who are in a similar situation. As I'm talking to you, there's someone out there that's struggling and there's a system that's failing them. And that has to stop. It has to stop. Hello, I'm Joel Breveld, medical myth buster and host of The Dose, a health policy podcast from the Commonwealth Fund.

Each season, I sit down with a leading health policy expert and medical professionals to have real conversations about the issues that keep them up at night. We talk about breakthroughs in their research and their new ideas to make our health care system work better for all Americans. This idea of equity needs to be taken up by everyone.

And wherever you are in your work, whatever sector that you're in, we need to have conversations about what tomorrow looks like. I hope you'll check out The Dose and enjoy listening to our interviews. You can find us at thedose.show or by searching your podcast app for The Dose from the Commonwealth Fund.

An Australian hiker travels to the American West to walk a wilderness trail. Wasn't afraid to be out on his own. But Eric Robinson vanished in the High Uinta Mountains. I remember thinking, "Eric, what were you thinking, mate?"

I'm Dave Colley. Join me on my podcast, Uinta Triangle, where I travel the world to answer the question, what happened to Eric Robinson? Follow Uinta Triangle, that's U-I-N-T-A Triangle, on Apple Podcasts or wherever you listen.

The years Renee has spent caring for her son Brandon, being his brain, his advocate, the mayor of his little care village, well, they've taken a toll. There's no doubt about that. But they've also given her an abundance of wisdom and expertise. So I wanted to know what she would say to other families who are taking care of a loved one with complex medical needs. If someone out there

is in the same situation as we are. And I know there's plenty of people. You never give up. Okay. No matter how tired you are, no matter how frustrating it is, there's always a way around something. It's going to take more work. It's going to be endless. Okay. But you cannot give up.

Because ultimately, the person that you love so much, whether it's a grandchild, whether it's a son, whether it's a father, a mother, no matter what age we're talking about, they need us to be their ears, eyes, mouth, everything. We can not let the system continue to fail our most vulnerable loved ones.

It's going to take being that squeaky wheel, you know, and reaching out to people and just calling, calling, calling, you know, social media. While it may be someone's worst nightmare, ultimately it's your best friend. Find the groups, find the people, find those that you know are struggling. I mean,

I created a social media group for loved ones like Brandon, and it has grown so much in the past 13 years where, you know, I've had families reach out to me to actually navigate the system when dealing with doctors. You know, when they're in the ICU, can you call? Can you be on the phone call when we have an emergency phone call? But I'm not really, you know, okay, if you want me to. And the doctors listen to me. Yeah.

You know why? Because I'm actually smarter than them. Yeah. Well, you're the expert now. You know, you've had to be. Yeah. It takes a toll on the caregivers. So the caregivers need time. They need time on their own. They, you know, so again, it needs a community of people to work together, you know, to give everybody a little bit of a break because you can't be on this, this, this never ending train and not get off and grab coffee. You can't.

you need to, you know? Yeah. You will. You've earned that in the least for all the, all the hours you've put into it. So I want to thank you for your time. You know, like just the fact that you've given us so much of your time, knowing how much you're, you're dealing with. I am so, so grateful for it. And, and,

Thank you for just being the tireless advocate for your son, for this community. And we so appreciate it. It's all of us. It's my mom. It's my dad. It's everybody. It's not just me. It takes, you know, many hands to sometimes cook a fabulous meal. And this is how it is. This is how it is.

Like Renee shared earlier, she's become the go-to person for other families who are fighting for care. Her Facebook group, Brandon the Brave, has nearly 9,000 followers. The comments on her posts are heartwarming. When Renee took Brandon to Canada last year for a medical trial, her community offered support and well wishes. It's also a place where members share their own struggles, whether that's caring for a kid with mitochondrial disease like Brandon or bonding as parents to sick children.

And across the country, I heard from other people with similar stories, like Susan, who is caring for her adult son in Pennsylvania. We just moved here last summer, so less than a year. And my son, who is in his mid-20s, has a health disability, a pretty significant impact.

We still have to rediscover all the services, all the waivers, all the disability programming that's in the area. And it's not like the government leads you to a place where you can just read about something and all of a sudden be able to navigate the system. A lot of it is either learning on the fly or hearing about it from someone else. So it's really the systems that can bring me down.

But seeing my son grow, even through illness and disease, from kind of a trusting child, you know, innocent, just into this strong, emerging young man is extremely rewarding. Maggie, located in Minnesota, is earlier in her caregiving journey for her son, but she's faced challenges similar to Susan and Renee.

Thankfully, my son has a lot of great services, has a great care team, but it's tough. It is really hard. And they, they meaning the medical system, healthcare, there's not that much of a guide. It's infuriating, but also you do find the people, the joy in it. I mean, my son is amazing. So, I mean, that is the biggest point of nothing else. He is pure joy.

But to see him, you know, navigating this alongside him, it's, you know, he's only six. And I wish that there was more navigation and more understanding and kind of breaking down the complexities for me and for my son. And we'll navigate together. We're early on our disability journey. And together, I know we will conquer these systems and we'll end with joy and love.

Maggie, Susan and Renee have all had to become masters at navigating the health care system. They've had to be the squeaky wheels and the whistles. It's inspiring to hear how these women advocate for their children. But let's be real. No one should have to spend years becoming a health care expert to get the basic care they need for their child. Fighting for your kids' health takes a toll, physically and emotionally.

The system isn't going to magically improve overnight, that's for sure. But one resource that can help is a care manager. These are professionals who have deep knowledge about how to make care plans for your child. They can help you navigate the health system and coordinate your care. Many insurance providers and state Medicaid programs offer this benefit.

When children get the care they need, it's a game changer, not only for the kids themselves, but also for their caregivers. This way, families can spend less time bogged down by care management and more time in those moments of joy and connection together.

There's more Uncared For with Lemonada Premium. Subscribers get exclusive access to bonus content like unaired interview clips from caregivers across the country. Subscribe now in Apple Podcasts. Uncared For is a production of Lemonada Media. I'm your host, Sujan Pak. Muna Danish is our supervising producer. Lisa Fu and Hannah Boomerschein are our producers.

Our mix is by Ivan Kurayev. Our music is by Andrea, Kristen's daughter and Hansdale Sue. Our associate producer is Isaura Aceves. Jackie Danziger is our VP of narrative content. Executive producers are Jessica Cordova-Kramer and Stephanie Whittleswax. This season of Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high-performing healthcare system.

Help others find our show by leaving us a rating and writing a review. You can follow me on Instagram at Sujin Park and Lemonada at Lemonada Media across all social platforms. Follow Uncared for wherever you get your podcasts and listen ad-free on Amazon Music with your Prime membership. Thanks so much for listening. See you next week.

This show is presented by the Commonwealth Fund, a nonprofit foundation whose mission is to promote a high-performing, equitable healthcare system.

The Commonwealth Fund supports research to improve health care policy and practice and has a long history of exploring what the U.S. can learn from the best health care around the world to do better here at home, especially for people of color, people with low income, and those who are uninsured. To learn more, visit CommonwealthFund.org. ♪

Hey, I'm Nicole Norfleet. And I'm Aaron Brown. And we work at the Minnesota Star Tribune. And we've got a brand new show called Worth It. Every week, we get together with a group of people who know Minnesota inside and out. We skip the Minnesota nights and get right to the good stuff. We share the stories and the happenings around the state worth your time and your money. Worth It from the Minnesota Star Tribune and Lemonada Media. Every Friday, wherever you get your podcasts.