Dear Representative,

My name is Cory, and I am a 47 year old father of three. I am writing to express my concern as the parent of a child with complex medical needs who relies entirely on Medicaid for her survival.

Everything was perfect

My 14 year old daughter, Lily was born a twin alongside her sister, Clara. Due to complications, Lily was born with the following unique traits her sister did not share with her:

  • 4lbs smaller than her sister

  • A chromosomal abnormality (inverted duplication and deletion of chromosome 2P)

    • Placing her on the autism spectrum

    • Global developmental delays

    • Bilateral sensorineural hearing loss

  • Asthma

  • Gastroesophageal reflux disease (GERD)

Though she was nonverbal, she was a joyful, social child who loved going to school. Lily had an Individualized Education Plan (IEP), and built bonds with her teachers, therapists and her friends from school.

She also shares an incredible bond with her twin sister Clara and her 18 year old brother, Carter, who has always been her biggest protector.

Then, everything changed

On April 27, 2022, Lily suffered a cardiac arrest while riding in the car on the highway. She had been struggling with eating in the days prior, experiencing increasing pain from esophagitis and reduced oral intake. Her mother had been syringe feeding her Pedialyte due to her inability to tolerate solid food. That day, while on the way to Children's Mercy Hospital for evaluation, Lily became apneic (temporary cessation of breathing) and pulseless in the backseat of the car.

Her mother, realizing the urgency of the situation, pulled over on the side of the highway and immediately began performing life saving CPR while waiting for emergency medical services to arrive.

Upon arrival at the hospital, doctors determined that she had suffered from respiratory failure, leading to cardiac arrest.

Emergency interventions were required to restore her heartbeat (Return of Spontaneous Circulation - ROSC) after 18 minutes of chest compressions and multiple doses of epinephrine. She was intubated, sedated, placed on vasopressor support, and admitted to the Pediatric Intensive Care Unit in critical condition where we lived for months.

Thanks to her Mother’s immediate actions, and the exceptional medical teams at Children’s Mercy

Lily survived.

Lily’s Ongoing Medical Needs

The brain injury from prolonged oxygen deprivation meant that she would never be the same again. Once she was stable enough to return home, our family was faced with a new reality. Lily was now completely dependent on life sustaining care.

She requires:

  • Over 20 medications daily to manage pain, seizures, and metabolic imbalances.

  • A gastrostomy tube (G-tube) for all nutrition, as she could no longer eat by mouth.

  • Fulltime nursing care at home, as she can no longer walk, or function independently.

  • Regular specialist visits to:

    • Neurology

    • Pulmonology

    • Gastroenterology

    • Palliative care.

  • As time went on, it became clear that private insurance was not enough to support her level of care.

Medicaid became her lifeline.

Medicaid and its impact for Lily

Lily was approved for Medicaid under the KanCare CHIP program, with coverage beginning August 15, 2022. Her Medicaid ID number is [REDACTED], and our case number is [REDACTED]. We pay a $20/month premium to ensure she has access to essential care. This program is the only reason she is not suffering.

Through Medicaid, Lily receives:

  • Home health nursing, which ensures she is monitored 24/7 and receives her medications on time.

  • Medical equipment, including feeding supplies, mobility aids, and respiratory support devices.

  • Specialist visits that are essential for managing her complex medical condition.

  • Emergency hospital care, without which she would not survive another crisis.

Without Medicaid, our family would be left with no way to provide for her daily medical needs.

These needs are not optional

they are life sustaining.

Why I Am Reaching Out to You

I am deeply concerned about proposed Medicaid cuts and restrictions, which could be catastrophic for children like Lily.

I urge you to:

  • Oppose any Medicaid funding cuts that would reduce services for individuals with disabilities.

  • Protect and expand Medicaid’s Home and Community-Based Services (HCBS) waiver programs, which allow disabled children to receive care at home instead of in institutions.

  • Ensure that children with complex medical needs remain eligible for full Medicaid coverage, regardless of parental income or other policy changes.

  • Lily does not have a voice in this fight, so I am fighting for her. If Medicaid is reduced or restricted, what happens to children like her? Without Medicaid, families like mine would have no way to provide the life sustaining care that is required every single day.

I would appreciate the opportunity to speak with you further about how Medicaid impacts families in your district. I hope you will stand with us and fight to protect the most vulnerable Kansans, the children whose lives depend on these services.

Please let me know how you plan to support Medicaid protections for children with disabilities. I look forward to your response.

Thank you for your time and your leadership on this critical issue.

Dad