Faces of Family Caregiving in Indiana

16/02/2024

This is who we are. This is us.

13/02/2024

Raya, 2, Grant County

We don’t have to worry about these dark and cloudy winter months, we have our “Raya” sunshine right here! Raya is the sweetest, most hilarious little girl with a strong will, big personality, and incredibly expressive eyebrows. She can often be found spinning in circles, running, or flapping and giggling at her favorite beloved toy—her socks. Her other favorite things include: watching mom sing, climbing on literally anything that she shouldn’t climb on, going outside to look at the trees, and being upside down.

Raya was born at just 26 weeks gestation and spent 6 months in the NICU. She required multiple surgeries, respiratory support, and a G-tube in order to be fed. Raya has complex gastrointestinal issues that make feeding and digestion difficult. She also has mild cerebral palsy, so she wears SMOs (ankle supports) all day every day. She has also been diagnosed with Global Developmental Delay, is non-verbal, and is still on a waitlist to be assessed for Autism.

Because of the Medicaid A&D Waiver, Raya’s mom is able to chauffeur her around to her 8 weekly therapies and her many specialist appointments. Without the opportunity for her mom to work as her caregiver, Raya would be receiving far fewer services due to a mass shortage in home health providers. Perhaps equally as damaging, Raya would not be able to have her attachment figure with her through every new milestone, every tough therapy experience, and every scary medical procedure. Due to her consistent care from her mom, Raya is able to co-regulate relatively quickly and effectively.

At a recent appointment with Developmental Pediatrics, the provider remarked that Raya seemed to be thriving greatly in part to her mom’s ability to stay home and work with her consistently in a routine. In the past few months, Mallory’s ability to stay home has led Raya to achieve incredible milestones such as walking and running, new verbal sounds, greater sensory tolerance, and increased sleep quality for everyone.

Raya hopes that some day she can meet each of you and share a little of her joy. The world could use more “Raya” sunshine, don’t you think?

13/02/2024

Jahleel, 11, Lake County

Jahleel’s beaming smile and infectious laugh truly light up a room!  He enjoys riding the bus to school, being taken for long strolls around his neighborhood or on local paved trails, and his favorite musical light-up toys. For all that he has been through, Jahleel has a tremendous capacity for fun and joy.

Jahleel was not able to breathe on his own at birth, had a 7-month-long NICU stay, lived in a hospital alone until after his second birthday when he was adopted. He has had over forty surgeries and sedated procedures in his lifetime, and survived two back-to-back episodes of septic shock last spring. 

Jahleel has three very rare genetic conditions and requires 24/7 skilled nursing facility level of care due to his resultant profound global disability and medical complexity.  He is dependent on a GJ-tube for all nutrition, BiPAP, and regular oral and nasal suction with a medical-grade machine. He cannot sit, stand, crawl, walk, talk, or communicate.  Jahleel requires full assistance from at least one, sometimes even two caregivers for bathing, dressing, oral care, someone to sit with him when he is in pain (which, unfortunately, is quite often), constant supervision to ensure that he isn’t seizing, aspirating, rolling on his feeding tube extensions, and much more.  His care requires frequent visits with doctors and sometimes hospitalization. 

When Jahleel was moved to the Medicaid A&D Waiver two years ago, his parents were able to be compensated for his extraordinary care. This was a gamechanger for their family. Jahleel was given access to the very best care most perfectly suited to him and his needs. It also meant that his family could buy a wheelchair-compatible house, and start saving to replace their wheelchair-accessible van when the time comes.

Jahleel is a very special young man who has endured a great deal in his young life, and he deserves the very best care to help him live his very best life!

11/02/2024

Please help our sweet children by co-signing this open letter to Governor Eric Holcomb and sharing it! 🙏🏼

An Open Letter to Governor Eric Holcomb: As parents of medically complex children and staunch advocates for their rights, we write with a sense of urgency and

11/02/2024

Cole, 7, Johnson County

Cole is all about music, baseball, and swinging outside! He loves going to school whenever he is able and can make anyone laugh with his “dance moves.” While he is non verbal, he is so good about communicating with his facial expressions.

When Cole was born, it seemed that he was perfectly healthy. At a couple months old, his parents noticed that he had nystagmus, torticollis, and delayed milestones, leading them to get an MRI. The MRI revealed Polymicrogyria, Nodular Heterotopia, and white matter loss. His current diagnoses also include Quad Cerebral Palsy, Lennox Gastaut Syndrome, Cortical Visual Impairment, sleep apnea, developmental delay, and dystonia. Cole has to be monitored 24/7 because his daily epileptic spasms can quickly turn into tonic clonics, where he loses his ability to breathe immediately. Cole is non-verbal and non-mobile, and he is unable to complete any daily tasks independently.

When Cole received the Medicaid A&D Waiver and his mom began to work as his caregiver, he was able to receive care that was truly catered to him and his needs. His mom had previously worked at the school that Cole attended. Many days, Cole didn’t have a choice but to have a seizure and sleep postictal at school because his mom had to be there for work. Since becoming his caregiver, they no longer have to worry about keeping him home after one of his seizures, and his mom no longer has to call in or show up late to work because he was seizing before they left the house. His mom able to truly tailor his care to his needs by rescheduling appointments and therapies during the week if Cole is having a bad seizure day. Additionally, Cole’s family no longer has to worry if he is getting his rescue medication after a seizure because she is now always with him. His family has been able to pay out of pocket for equipment that insurance hasn’t covered, provide Cole with a fully accessible house, and work towards vehicle modifications.

With their time together at home, Cole is working on standing independently in his new gait trainer. He is a thriving, happy boy!

11/02/2024

Maddie, 4, Hamilton County

Maddie loves reading books, singing songs, and watching and . Her brother, Mason, is her favorite person ever, and she thinks everything he does is hilarious! She loves attending developmental preschool and loves being nosey watching all the other kids. Maddie is super smiley and joyful, despite all the challenges she faces.

Maddie was born seven weeks prematurely, via emergency c-section, with her umbilical cord wrapped around her neck three times. She was diagnosed with hypoxic ischemic encephalopathy, which has resulted in spastic quadriplegic cerebral palsy and cortical vision impairment. Maddie is 100% G-tube fed due to a risk of aspiration when eating by mouth. She cannot roll, sit, or walk on her own, so she is completely dependent on other people to move her around. Maddie’s family is working with her on using an eye-gaze AAC device to help her communicate since she is non-verbal.

In order to provide Maddie with the care she needs, her mom gave up her career in the medical field for 15 years due to lack of available skilled caregivers. Maddie keeps her mom busy with multiple therapies and specialist appointments each week. When Maddie’s mom began to work as her caregiver through the Medicaid A&D Waiver, their family was able to purchase equipment for Maddie that insurance doesn’t cover and recently bought a van that can fit her wheelchair.

Maddie’s mom is happy that she’s been able to give Maddie the best care and support she deserves, and Maddie should not lose access to that care!

09/02/2024

Michael, 5, Clinton County

Michael is a very busy boy! He loves running and reading. He is fascinated by robots and . You can often find him taking things apart to figure out how they work.

Michael also has a genetic condition referred to as a BCL11B mutation. It causes immunodeficiencies, feeding, speech, and digestive struggles, hypoglycemia, severe eczema, autism, and intellectual delays. Michael struggles with realizing when things are not safe like trying to climb up things he’s stacked and running off in public places. He depends on a feeding tube in his belly for nutrition and medications to keep his digestive system running. Missing those, he ends up in the hospital.

Michael has lived with his mom and siblings for his whole life. When he was born, he went without a diagnosis for a long time and his specialists had to do their best to try to manage his symptoms. His mom would babysit to try to earn enough to cover gas to and from his appointments and therapies. They lived in a shelter and relied on a food pantry for necessities. They were put on several waitlists for a home nurse. In 4 years, they were able to secure nursing care for only a week.

When Michael received the Medicaid A&D Waiver and his mom began to work as Michael’s attendant caregiver, the family was able to make it out of the shelter. They now live in a home in a very small town where Michael has a large yard to play in. There isn’t much traffic and Michael is beginning to learn boundaries in a safe environment. Michael hasn’t had a hospital stay in over a year! Mom has been able to manage his tube feeds and medications and work with his doctors to monitor him more closely. She is also able to travel three hours for his specialists in Cincinnati regularly and one hour for therapies weekly.

With this specialized and dedicated care, Michael is thriving! He deserves to maintain access to the care best suited for him and not have to sit years - or even longer since he lives in a rural area - on a waitlist for nursing care.

09/02/2024

Leo, 4, Allen County

Leo is a HUGE extrovert. He loves introducing himself to pretty much anyone - nobody is a stranger! Leo loves to dance to “jammy songs,” as he calls them. He has a deep love for “Electric Avenue,” “Staying Alive,” and “Kung Fu Fighting.” He also has the best laugh in the world.

Leo was born with Spina Bifida, hydrocephalus, and Arnold Chiari Malformation. Due to low tone and other complications, Leo had a G-tube placed at 5 months old for feeding. Due to mobility, muscle tone, and coordination issues, his parents assist Leo in his daily tasks like transferring, changing, feeding, and working on therapies at home. Leo currently attends 4 therapies per week, in addition to the therapy tasks they work on daily at home. Leo’s family also frequently travels out of state for appointments and clinics.

The Medicaid A&D Waiver and having a parent work as his caregiver has been such a Godsend for Leo’s family. When Leo’s mom began to work as his caretaker, his dad, who had been working somewhere with a very long commute in order to support the family, was able to find a position that allowed him more time with the family. Having this dedicated care from his family allows Leo to have continuity of care and a dedicated team to help him thrive!

08/02/2024

Dyllan, 13, Hamilton County

Dyllan is so bright and he loves to play on his iPad. He’s great with electronics, and loves remote control cars, bubbles, and music! He has the best smile and is so joyful. Dyllan makes friends wherever he goes!

Dyllan joined his family when he was four years old. He has quadriplegic cerebral palsy, Crohn’s disease, and epilepsy. Dyllan is non verbal, tube fed, and unable to walk without the help of his walker. He requires care to accomplish tasks such as bathing, dressing, eating, or any sort of life skill.

When Dyllan received the Medicaid A&D Waiver and his mom was able to work as his caregiver, the quality of his care improved greatly! Almost all of Dyllans care is in Cincinnati, as he is too medically complex to be treated in Indiana. As his caregiver, his mom is able to travel for his care, multiple times a month at minimum, for infusions, appointments, and testing. Dyllan’s family has recently, with the help of the funds from the attendant care program, been able to buy a new vehicle that we can finally equip with a ramp. This will give Dyllan access to a power chair for him to get around his community better!

With his mom as his caregiver, Dyllan has access to access to the services and resources he needs to succeed!

08/02/2024

Baylor, 7 months, Kosciusko County

Baylor wins the best hair award when it comes to all babies! He’s one happy and very loved little guy. He loves to roll all over the house and gives the sweetest smiles. Napping in his dada’s arms is his favorite thing to do.

Baylor might just look like a “normal” and healthy baby, but he has so much going on inside. Baylor went through a traumatic birth and unfortunately lost oxygen to his brain which caused some damage. He has Cerebral palsy, Hypoxic-ischemic encephalopathy, Cortical Visual Impairment, hearing loss, seizures, and some other complications. Baylor didn’t cry at birth and still hasn’t, but he lets you know when something is wrong. He is strictly G-tube fed due to not having a gag reflex and difficulty swallowing. Baylor is on schedule for his feeds and medications. He also is on oxygen and breathing treatments three times daily.

Because of Baylor’s Medicaid A&D Waiver, his mom has been able to work as his caregiver. This allows Baylor’s mom to attend his many appointments each month without fear of losing a job - because that’s part of her job! She is also able to take him to his four weekly therapies and work on his home programs with him throughout the day.

Baylor deserves the best care, and no one can provide better care for him than his mom!

08/02/2024

Elianna, 8, Marion County

Elianna is a sweet, caring, and helpful person. She is the middle child out of 5 and loves helping care for her younger siblings. Despite the many challenges Elianna always has a smile on her face.

At 4 months old, Elianna had her first seizure. After many seizures, a negligent doctor prescribed a dangerous medication that was slowly killing her and causing more seizures. Years later she was diagnosed with a genetic defect called Dravet Syndrome. It is a catastrophic form of Epilepsy that is intractable and does not stop with medication. Almost everyday Elianna has multiple seizures. As a result of relentless seizures and countless medications this sweet girl’s body and physical condition was ravaged.
Elianna has severe Autism, Global Development delays, and physical problems. She requires frequent medication, seizure monitoring, and constant supervision due to Autistic impulsivity. Her advanced stage of Dravet Syndrome requires skilled nursing.

As a result of the Medicaid A&D Waiver and having her mom work as her caregiver, Elianna has begun to thrive in a comfortable familiar home setting. Her family no longer has to place her in unqualified childcare and school settings that left her neglected. Financially the provisions allowed her family to place her in Applied Behavioral Therapy and lifted them out of extreme poverty. Elianna’s hospitalizations have decreased, and her family is an able to provide preventative care through being well versed with the subtleties of Dravet Syndrome.

With her mom as her caregiver, Elianna is finally able to access the resources and services she needs to fight the battles in her path and improve her health and development!