Medicaid Matters: Building Stronger Futures for Wisconsin's Children

Caroline was diagnosed with Down syndrome and a heart condition prenatally. She spent months in Children’s Wisconsin Neonatal Intensive Care Unit (NICU) and had open-heart surgery when she was almost 3 months old. She has a G-tube, wears braces, glasses and sees nearly a dozen specialists at Children’s Wisconsin in Kenosha and Milwaukee. Caroline’s family has commercial insurance through their employers and applied for Katie Beckett Medicaid, due to Caroline’s health conditions. Medicaid covers what commercial insurance doesn’t, including supplies Caroline needs. Their family feels very lucky to have that; without it, they would be struggling. Her mom didn’t plan on not working after having Caroline, but with the care she needed combined with her appointments and therapies, it made sense for her to stay home. With their reduced family income, Katie Beckett Medicaid has made a huge difference for their family.

Please keep Medicaid strong for kids like Caroline!

In 2021, Sammy, then 12 years old, had played well in his football game, but suddenly he had severe stomach pain and fatigue. Sammy saw doctors in Sheboygan who suspected it was his appendix, but they weren’t comfortable operating on a child Sammy’s size, so they sent him to Children’s Wisconsin. Several tests and scans revealed Sammy’s appendix was fine, but he had amass of lymph nodes that had swollen and attached to his colon. Sammy’s body began shutting down – fluid was building around his lungs, his organs began swelling, and he needed a blood transfusion. Children’s Wisconsin providers started Sammy on a steroid treatment and his condition began to improve. After three weeks of treatment and physical therapy, Sammy was able to go home. Today, Sammy is healthy and enjoys playing sports. He has regular checkups with his doctor, and his scans show no signs of the mass returning. Having Medicaid coverage allowed his family to focus on figuring out what was wrong with Sammy and his recovery, instead of stressing over the finances behind his treatment. Sammy’s mom is a single mom with a lower income. At the time of Sammy’s illness, his mom wasn’t working, and they were at risk of losing their vehicle and their home. Knowing that they had Medicaid coverage so Sammy could get the care he needed enabled her to have peace of mind during this traumatic time. When she reflects on all of the care Sammy was able to access – from surgeons, oncologists, social workers, chaplains and time in the ICU – without insurance, none of that would have been possible. Sammy’s mom believes Sammy wouldn’t be here if it weren’t for his Medicaid coverage, and his ability to access care means the world to their family.

Please keep Medicaid strong for kids like Sammy!

George has a huge imagination, loves music and brings joy to all around him. George was born with cleft lip and palate and an almost nonexistent jaw, which is attributed to Pierre Robin sequence, a condition that causes other oral health challenges, including difficulties with feeding and speaking. Because of George’s small stature and jaw, George needed providers who had the specialized tools and expertise to help meet his oral health needs. Children’s Wisconsin dental providers have performed surgery to cap several of George’s teeth and to complete the fillings he’s needed. With Medicaid insurance and his special needs, George’s family could not find a provider near their home who was able to provide the great quality of care that he has received at Children’s Wisconsin. Their family is grateful to Children’s Wisconsin for the care they received and for their coverage from the Medicaid program.

Please keep Medicaid strong for kids like George! 

These siblings have received care at the Midtown Clinic for many years. They receive pediatric primary care to ensure they are growing, healthy and thriving. Several years ago, during one of his well-child visits, Prince had a routine blood lead test. His results were extremely high, requiring him to be hospitalized at Children’s Wisconsin for specialized care. Children’s Wisconsin centralized lead care management team helped connect his family to the local health department, who helped address the lead risks in their home, including updating their windows, which were a source of lead contamination. In addition to primary care at Midtown Clinic, Prince and King both see the dental providers who are integrated at Midtown for regular checkups. Children’s Wisconsin also offers integrated mental and behavioral health at primary care clinics, which Prince and King have also benefited from. Prince received an ADHD diagnosis, and the mental and behavioral health team helped manage his medication. Having access to the mental health team on-site when they needed it was crucial. Their Medicaid insurance has been critical for their family, helping them access services to keep their kids healthy. 

Please keep Medicaid strong for kids like Prince, King and Idanna!

When Camden was born, a blood sample was taken as part of a standard newborn screening. Among the 50 or so diseases and birth defects screened for is spinal muscular atrophy (SMA), a genetic neuromuscular disorder that causes a loss of muscle strength and control – and Camden’s test came back positive. SMA causes the body’s muscles to deteriorate, causing severe weakness, problems swallowing and difficulty breathing. Of the treatment options, Camden’s parents opted for a one-time gene therapy treatment, where the missing gene is put into a virus and given to the patient to help produce what their body needs. At one month old, Camden had his gene therapy treatment – early treatment is crucial to its success. Today, Camden is healthy and showing no symptoms. For Camden’s family, having Medicaid coverage removed the worry about the cost of treatment during a very stressful time in their lives. Saving Camden’s life deserved their entire focus. With Medicaid support, his family didn’t have to think about whether they could afford to save his life.

Please keep Medicaid strong for kids like Camden!

Lici loves playing with her younger sister, listening to music and going for walks outside. When Lici was young, she was diagnosed with an ultrarare neurodevelopmental disease associated with the CAMK2B gene. Lici experiences developmental delays, uses a wheelchair and is fed through a J-tube overnight. Lici’s mom had trouble finding dental providers near their home that would care for Lici due to her complex health needs and her Medicaid insurance. In addition to visiting Children’s Wisconsin Dental Clinic, Lici also sees several specialists, including GI, ophthalmology, neurology and her pediatrician at the Kenosha Clinic. Without her Medicaid coverage, her mom doesn’t know how they would be managing all of her health care needs, including her three recent surgeries. With Lici’s extensive health care needs and countless appointments, her mom, as Lici’s primary caretaker, isn’t able to work full-time. Private insurance often does not cover the formula or the supplies she needs; however, Medicaid covers everything Lici needs to be healthy. 

Please keep Medicaid strong for kids like Lici!

Solomon was born a healthy baby boy; however, when he was 3 years old, his parents noticed some challenges with his gross motor development. After many months of pushing for testing, Solomon was seen at Children’s Wisconsin and was diagnosed with Duchenne Muscular Dystrophy (DMD)shortly after he turned 4. Those with DMD slowly lose their ability to walk, care for themselves and even breathe on their own, becoming fully dependent on their caregivers. Currently, there is no cure for DMD. Solomon’s family did participate in a gene therapy trial that they believe has given Solomon years of mobility and high quality of life. Solomon loves to play on his computer using airplane simulators and enjoys Formula One, Legos and playing gaga ball with his friends. He dreams of becoming a nurse, like his dad, and being a father himself. Solomon’s family is incredibly thankful for his Medicaid coverage, which has allowed them to continue living life to the fullest, without worrying about medical bills or how to pay for needed monthly medications.

Please keep Medicaid strong for kids like Solomon!

When Daijah was born, the newborn screening blood test revealed that she had Sickle cell disease type SS, a severe blood disorder. Daijah experiences frequent pain, anemia, infection and low hemoglobin levels. Daijah sees the care team at the MACC Fund Center at Children’s Wisconsin. In2023, Daijah had a silent stroke and has since required monthly blood transfusions and medications to keep her healthy. Daijah is on the donor list for a bone marrow transplant, which would be a life-changing step in her journey. Without Medicaid as their health insurance, her family doesn’t know where they would be, physically, emotionally or financially. From her monthly blood transfusions, visiting her doctors every 3 months and 12years of regular medications, Medicaid has helped Daijah’s family focus on her survival.

Please keep Medicaid strong for kids like Daijah!

Emma and Tay were both fostered and eventually adopted by their parents, Mandy and Jeremy. Emma loves the beach, swimming, boat rides, and spending time with her family. Tay enjoys watching all sports, riding horses, fishing, swimming, and playing with cars and trucks. While in the womb, Emma suffered two strokes and then a third shortly after she was born. She was sent home on hospice, survived, and was eventually diagnosed with cerebral palsy and an aggressive form of epilepsy known as Lennox-Gastaut syndrome, among many other diagnoses. Tay was born with both of his femurs not fully developed, a condition known as proximal femoral focal deficiency, as well as Pierre Robin sequence, a deformity of the jaw. After he was born at a hospital in Green Bay, he was airlifted to the Children’s Wisconsin Milwaukee Hospital where he spent time in the NICU and PICU.

Emma and Tay see more than a dozen specialists at Children’s Wisconsin, including many at the Appleton Clinic. The family’s focus for Emma is comfort and quality of life, while their focus for Tay is independence and functionality. Medicaid has been an essential part of both of their journeys. It has provided a vast amount of opportunities medically, in the form of therapies, medications, surgeries and procedures, and equipment for them to have a fulfilling life and be thriving like they are today. Their family is extremely grateful.

Please keep Medicaid strong for kids like Emma and Tay! 

These brothers were fostered and later adopted by their parents, who were licensed foster parents through Children’s Wisconsin. Thankfully, the boys have been kept together, were able to achieve stability, and begin to recover and heal. Aiden and Elijah were both diagnosed with autism. When Aiden first entered foster care, he didn’t speak, and Elijah had very limited communication skills, often screaming to express himself. While the boys are physically healthy, they have significant emotional and behavioral health needs. Today, the boys are thriving, thanks to support from Medicaid. They especially benefit from services from the Children’s Long Term Support (CLTS) Program, which leverages Medicaid funding to support kids with disabilities. With autism and emotional dysregulation, typical childhood group activities can be challenging for Aiden and Elijah. Medicaid provides individualized swimming lessons, recreational activities and respite care – including a special class for Elijah, who is a fantastic artist. While the boys’ parents work and have primary health insurance, their family – and many others like them – would not be able to afford these critical services without help from Medicaid. Medicaid funding helps provide the boys with typical childhood activities and the tools they need to set them up for success in school and beyond.

Please keep Medicaid strong for kids like Aiden, Elijah and Axel!

Rylan was an overall healthy 11-year-old when his mom noticed small, pinpoint-sized red and purple spots all over his body. At urgent care, they performed blood work and ultimately transferred him to Children’s Wisconsin via ambulance. After multiple tests, Rylan was diagnosed with severe aplastic anemia. He stayed in the hospital for three months, and he needed a bone marrow transplant to help his body recover. Rylan recently had his transplant and is doing great. He has lab work and exams several times each week. Rylan’s mom took a leave of absence without pay from work to stay with him during this time, and his dad cut his work hours to better care for their other kids at home. Without the help of Medicaid, Rylan’s family would not only have to figure out how to pay their normal bills, but also medical bills on top of that. Medicaid helped his family to be able to focus on Rylan and not have to worry about how they were going to pay for his lifesaving medical treatments. 

Please keep Medicaid strong for kids like Rylan!

When Charlie was born, he was healthy and thriving. However, at two months old, he stopped eating. Soon, his parents learned of other concerns Charlie had impacting his heart, his eyes, his respiratory system, his skin, his thyroid and more. Charlie was diagnosed with a very rare genetic disorder called Harel-Yoon syndrome. He doesn’t talk, eat or walk on his own. Today, Charlie sees 15 different specialists at Children’s Wisconsin, has had 18 surgeries and has undergone dozens of procedures. Charlie had rods surgically placed in his back to correct scoliosis and has surgery every six months to have the rods lengthened. While Charlie was bornin Milwaukee, his family moved to De Pere when he was 1 year old to be closer to family. Children’s Wisconsin Fox Valley Hospital and the Appleton Clinic help provide Charlie with some of the care he needs closer to home, including his GI, endocrinology, cardiology and other specialists. For a kid who cannot talk, Charlie loves being around people and is obsessed with FaceTime. In a life filled with so much sadness, worry and stress, Charlie’s mom says that his secondary Medicaid coverage provides some vital relief. Medicaid has prevented significant family debt. It covers high prescription copays, diapers, respite care and quality-of-life medical equipment.

Please keep Medicaid strong for kids like Charlie!

When Xavier was 6 months old, he suffered a traumatic brain injury. He was placed with his foster parents, who later adopted him when he was 2 years old. Xavier has had several brain surgeries at Children’s Wisconsin, including procedures to place and remove shunts and to disconnect a portion of his brain that was causing seizure activity. Overall, he has had more than a dozen hospital stays at Children’s Wisconsin and continues to receive regular monitoring for his seizure condition. Because of his medical needs, Xavier has Medicaid insurance that covers everything he needs –from lifesaving surgeries, seizure medications and regular checkups when he’s doing well. Having Medicaid coverage has helped his family provide and care for Xavier and ensure he’s a happy, healthy teenager. 

Please keep Medicaid strong for kids like Xavier!

11-year-old Ellie loves playing with her brothers, enjoys swimming and is obsessed with dogs. When she and her twin brother were born, her parents had expected complications – in fact, they were prepared that Ellie wouldn’t survive. Ellie’s mom went into labor early, and as soon as Ellie was born, she was transferred from a local hospital to Children’s Wisconsin. Ellie was born with her bladder outside her body and several other GI and kidney challenges. During her first year, she had surgery to create a colostomy, a G-tube inserted for feedings, two bladder repairs and a flight to Children’s Wisconsin Intensive Care Unit. While Children’s Wisconsin providers were able to repair function in one of Ellie’s kidneys for two years, she needed a transplant. After traveling to Children’s Wisconsin for dialysis three times a week, Ellie received a kidney from her mom when she was 3 years old. Recently, Ellie learned her body was rejecting the kidney. She returns to Children’s Wisconsin regularly for coordinated follow-ups with several specialists. Medicaid has been an absolute blessing throughout Ellie’s complicated and scary medical journey. Medicaid not only helps offset some of the large copays left after her primary insurance pays, but on at least three occasions, Ellie was able to get a lifesaving medication and/or procedure due to Medicaid allowing it when the primary insurance denied it. She is thriving amidst a life of medical procedures, in large part to the help she has received from Medicaid, and her family is so grateful.

Please keep Medicaid strong for kids like Ellie!

Andrew was born with a life-threatening skull condition, metopic synostosis, which required half of his skull to be removed and reworked when he was just 7 months old. He also had a suspected stroke that impacted his development. He has Ehlers-Danlos Syndrome, which affects connective tissues in his body, and also suffers from reflux and GI concerns. Andrew sees several specialists at Children’s Wisconsin to help him be healthy. Andrew has Katie Beckett Medicaid as secondary insurance, which covers medical care that his primary insurance doesn’t cover. Whether it’s emergency department visits to check on concerning symptoms, regular checkups with his specialists, certain tests or procedures, or a recent hospitalization, Andrew’s family doesn’t have to worry about getting him the care he needs. No family can properly prepare, financially or otherwise, for a child with special needs. Medicaid coverage enables kids like Andrew to have a higher quality of life.

Please keep Medicaid strong for kids like Andrew!

When Eli’s mom was 34 weeks pregnant and visiting family in La Crosse, her water broke early and Eli was born prematurely. He stayed at a hospital in La Crosse for six weeks, receiving oxygen support, having genetic testing and uncovering a heart condition. Eli developed a hernia and the hospital did not have a pediatric anesthesiologist to manage Eli’s complex care. Eli was flown to Children’s Wisconsin and spent the next week in the Neonatal Intensive Care Unit (NICU). Later, Eli’s genetic results revealed he had a rare genetic disease called Loeys-Dietz Syndrome that affects the connective tissues in his body. This has impacts across many aspects of Eli’s health, resulting in several surgeries for hernias and a cataract, multiple hospitalizations, and countless visits to see specialists for procedures and tests. Today, Eli sees 15 specialties at Children’s including heart, respiratory, GI and urology, among many others. While Eli’s family has primary health insurance through work, Eli’s health needs have a significant financial impact on their family. He receives supplemental Katie Beckett Medicaid insurance, which covers health care costs the primary insurance does not. Having Katie Beckett Medicaid coverage alleviates the stress for his family, so they don’t have to decide between seeing the specialists Eli needs or paying their bills. It removes that financial burden and allows them to focus on getting him the care he needs.

Please keep Medicaid strong for kids like Eli!

Callen was diagnosed at birth with Down syndrome and spent a month at Children’s Wisconsin Fox Valley Neonatal Intensive Care Unit (NICU). Callen went home from the NICU on oxygen and has low muscle tone, which causes him to have floppy airways. He is seen by specialists in the Down syndrome clinic, pulmonology, asthma/allergy, otolaryngology (ENT), and physical, occupational and speech therapy. Children’s Wisconsin specialists and social workers were able to help Callen’s family connect to additional resources and supports, who helped them navigate his health, development and their new normal. Callen continues to see specialists today, including several therapies at the Appleton Clinic, close to their home. While Callen’s parents both work and have insurance, without Callen’s secondary Medicaid coverage, they would face significant financial hardship. Medicaid covers co-insurance for his many specialty visits, testing, hospitalizations and therapies that are crucial to Callen’s health and well-being. His Katie Beckett Medicaid covers diaper supplies, music therapy, before/after school support, and other resources to promote Callen’s development and safety. Medicaid coverage provides Callen’s family with the ability to provide the care he needs to survive, while continuing to work and provide for Callen and his siblings.

Please keep Medicaid strong for kids like Callen!

When RJ was born, he experienced an HIE event (hypoxic ischemic encephalopathy), which resulted in damage to his brain and caused seizures. Soon after RJ went home, he developed an eye infection and was hospitalized. This was the beginning of RJ’s journey at Children’s Wisconsin, seeing several medical specialists just within his first months of life. As he grew and developed, he was later diagnosed with cerebral palsy and autism. In addition to regular pediatrician and dentist appointments, RJ is seen by Children’s Wisconsin Complex Care Program, which helps coordinate his specialty care, including GI, ophthalmology, neurology, sleep, PT/OT and more. For kids like RJ with complex health issues, typical illnesses, like a stomach bug, can be very serious. The Complex Care team helps provide guidance on when he needs to be seen, by whom, and in what setting to ensure RJ is healthy and receives the care he needs. Today, RJ is working with Children’s psychology and mental and behavioral health team to address behaviors and feelings as he grows and develops. With all of his appointments, hospitalizations, tests and more, RJ’s family was facing significant financial strain. After RJ was diagnosed with autism, he became eligible for Katie Beckett Medicaid, which was a game changer for their family. Medicaid helps cover RJ’s intensive applied behavioral analysis (ABA) therapy and weekly speech, physical and occupational therapied to help him progress and be the healthiest he can be. It also covers diaper supplies and nutrition support. Katie Beckett Medicaid helps preserve their family’s livelihood and allows them support RJ the best they can.

Please keep Medicaid strong for kids like RJ!

Today, 10-year-old Rilei enjoys reading, camping, kayaking and video games, of course. When Rilei was first adopted by his dad through Children’s Wisconsin, Rilei had experienced significant neglect. His Medicaid coverage helped support him in accessing the physical, occupational and speech therapies he needed to build his skills and adapt to his new, supportive environment. Medicaid also covers Rilei’s regular yearly checkups and biannual dental visits, helping ensure Rilei is healthy and well. To help support Rilei’s behavioral and emotional needs, Medicaid coverage enables Rilei to receive regular mentoring and counseling. These services are difference-makers for Rilei and would be out of reach for his family without the support from Medicaid.

Please keep Medicaid strong for kids like Rilei!

When Holden was 3 months old, he seemed unwell; just hours later, Holden’s mom was watching Children’s Wisconsin emergency department team perform CPR, trying to save Holden’s life. His family later learned that Holden had been experiencing supraventricular tachycardia – a heart arrythmia that caused his heart to beat rapidly over a long period of time, ultimately causing his heart to fail. He spent four days on life support and six weeks in the hospital. With medication, Holden’s heart was able to heal, and they will continue to monitor him as he grows. Holden was seen by several specialists at Children’s Wisconsin following this episode – including the GI team, who recently removed Holden’s G-tube after many years of tube feeding. As Holden grew, he was diagnosed with autism and ADHD. He sees his pediatrician at Southwest Pediatrics and Children’s Wisconsin Dental Clinic for regular checkups. Children’s dental specialists are well-equipped to manage Holden’s special health care needs, with sensory rooms for regular cleanings and had a coordinated team to monitor Holden’s heart when he had a tooth pulled. After Holden’s heart episode and extensive hospital stay, he qualified for Katie Beckett Medicaid as his secondary insurance. What followed were hundreds of appointments, countless procedures and medications – their family describes this coverage as a godsend. Holden’s nutrition was delivered as specially designed, pre-blended food via his G-tube with the necessary supplies that were covered by Katie Beckett Medicaid each month. Holden’s mom shares that having Medicaid coverage eased their minds and took that financial burden off of them when they had so many other things to deal with physically, mentally and emotionally over the years.

Please keep Medicaid strong for kids like Holden!

When Andrea was 5 months old, she developed a rash on her skin. Her pediatrician recommended blood work and discovered she had a very low amount of platelets. She was referred to Children’s Wisconsin hematology team to learn why her platelets were so low. Andrea visited Children’s Wisconsin each week for blood work and testing. She was eventually diagnosed with immune thrombocytopenic purpura (ITP), an autoimmune blood disorder where the body’s immune system mistakenly destroys platelets. In order to help increase her platelet count, Andrea tried several medications and had multiple blood transfusions, but her platelet count remained low. After a recent treatment, Andrea’s platelet levels have begun to increase. She continues to receive weekly injections at Children’s Wisconsin to continue to boost her platelet count. Andrea’s family contributed a sample of her blood to help further research at Children’s Wisconsin to help more kids like Andrea.

With ITP, Andrea’s blood doesn’t clot as well, causing easy bruising and bleeding. Minor cuts, scrapes, falls or nosebleeds can be dangerous for Andrea, which prompt visits to Children’s Wisconsin emergency room. Andrea’s family takes extra precautions to keep her safe, including keeping her out of daycare because her platelets drop dangerously lower when she gets sick. At one point, her platelet count was 3,000 when the normal range is between 150,000-450,000. Between keeping Andrea safe and her weekly blood work, appointments and treatments, Andrea’s mom stopped working to care for her and lost their health insurance coverage. Medicaid has enabled Andrea and her family to access the specialists, cutting-edge research and treatments to help Andrea be healthy. Medicaid allows her family to focus on her, not on making ends meet, and provides great peace of mind and relief that they can get Andrea the care she needs. Andrea’s family is very grateful for Medicaid support so they can access Children’s Wisconsin specialty care for their daughter.

Please keep Medicaid strong for kids like Andrea!

Greta has been seeing Children’s Wisconsin specialists since she was about 3 years old. She was diagnosed with nonverbal autism and cognitive disabilities. She also has apraxia of speech, a neurological disorder that makes it hard to speak, so she uses an augmentative and alternative communication (AAC) device to communicate. Greta has eosinophilic esophagitis, a chronic inflammatory disease that impacts her esophagus. She takes regular medication and sees Children’s Wisconsin GI specialists for endoscopy checkups. Greta is not able to swallow solid foods so she drinks PediaSure® and eats smooth baby food for her nutrition. Greta and her family are working with Children’s Wisconsin therapies team to receive chew therapy, which helps Greta develop biting and chewing skills. With Greta’s autism and health care conditions, she qualifies for secondary Medicaid coverage. Medicaid picks up the costs not covered by her primary insurance, including for her many specialty appointments and medications. Medicaid also covers Greta’s chew therapy, which is helping her progress toward hopefully eating typically and avoiding a feeding tube. Secondary Medicaid coverage supports Greta in getting the care, medicines and therapies she needs to thrive.

Please keep Medicaid strong for kids like Greta!

When Oliver was a baby starting to eat solid foods, his mom and child care providers noticed he wasn’t able to swallow. Within several weeks, Oliver dropped from the 97^th percentile to the 3^rd percentile. Oliver was admitted to Children’s Fox Valley hospital in a Neenah for a week to stabilize him and place a feeding tube and then spent 3 weeks in Children’s Milwaukee hospital to continue to monitor him and ensure he was safe and healthy to return home. Genetic testing revealed that Oliver had nephropathic cystinosis, a rare and complex genetic disorder that affects his eyes, causes kidney failure, muscle weakness, difficulty swallowing, and more. Today, Oliver is fed formula and medications through his g-tube. He sees several specialists at Children’s Wisconsin for regular check-ups and lab work, including nephrology, GI, nutrition, ophthalmology, cardiology, neurology and more. Oliver takes regular medications including a medication to slow the disease’s progress, however someday he will likely need a kidney transplant. Because of Oliver’s rare condition, Children’s specialists help to guide his care. Medicaid has been key to managing Oliver’s condition and supporting his health. His Medicaid covers out-of-pocket costs for his necessary medications, formula, supplies, regular appointments and more. It is a crucial lifeline that supports his access to care, his treatments, and his survival.

Please keep Medicaid strong for kids like Oliver!