Fighting For Access To Care: Medicaid & Legislative Support For Children

Children’s Hospital & Medical Center is the only safety-net provider for children in the state of Nebraska and serves children who have specialized and highly-acute needs. We are fortunate in Nebraska to have a specialized children’s hospital.

The reality for children’s hospitals across the nation is that Medicaid is the primary payor. Medicaid payments are not sufficient enough to cover the cost of care provided. Children’s hospitals are challenged to provide quality care, sufficient access to care and expanded programs to accommodate the growing needs of this vulnerable population.

In Nebraska, Children’s has seen a steady increase in volume for our patient population that relies on Medicaid for health insurance coverage. In fiscal year 2018, Children’s has anticipated an average Medicaid payor-mix to be 48%.

Fast Facts
  • Children make up nearly 50% of all patients enrolled in Medicaid, but only account for 20% of the cost.
  • Of all the children enrolled in Medicaid, 6% are medically complex.
  • Medicaid-enrolled children with medically complex needs account for 40% of pediatric Medicaid charges. This makes them most vulnerable to changes in Medicaid funding.

What people don’t realize is that when a family is met with a devastating diagnosis, the out-of-pocket costs year over year can be difficult for a family to endure. Therefore, it’s common for the patient to be enrolled in Medicaid as a secondary payor when their condition has complex treatment involved.

Multiple attempts have been put forth by Congress to fundamentally restructure Medicaid financing into a per capita cap or block grant model, with the goal of saving money for the federal government in the short- or long-term. Restructuring Medicaid would erode health coverage for children and families and we need to fight to preserve Medicaid for the children who need it most.

How To Get Involved

  • Contact your senator: You can find out who your senator is as well as their address, phone number, and email, at the Nebraska Legislature website. Write a letter, make a call, or send an email. If you are a Children’s employee or family member of a patient, please contact Liz Lyons, Director of Advocacy & Government Affairs, first for guidance on how to craft your message:
  • Follow legislative hearings and live debates: Visitors can watch the Legislature in person. You are welcome to watch from the third-floor balconies in the Norris Chamber. You can also watch remotely. Nebraska Educational Telecommunications (NET) provides live broadcasts of public committee hearings and legislative floor activity. View a livestream, watch videos of previous broadcasts, and find out about upcoming broadcasts on the NET website.
  • Testify at a committee hearing: Committees may consider several bills in an afternoon. Most bills and government appointments include time for testimonies from community members. Learn more about testifying in person on the Nebraska Legislature website. If you are a Children’s employee or family member of a patient, please contact Liz Lyons, Director of Advocacy & Government Affairs, first for guidance on how to craft your message:
  • Connect with relevant organizations:
  • Join the Children’s Health Champion Network: This is a group of individuals who are passionate about children’s health issues. By joining the network you’ll receive newsletters to keep you informed about issues impacting children’s health and equip you to be a voice in the community.

Join The Children’s Health Champion Network

For further information on policy advocacy and government affairs, contact Liz Lyons, Director of Advocacy & Government Affairs, at 402-955-4139 or

Legislative Priority: Access To Care Through Medicaid

Our main legislative focus is Medicaid, which is a joint program of the federal and state governments. Our state and the federal government work together to cover necessary medical services for low-income families and children who meet certain criteria.

What Services Does Medicaid Cover?

Medicaid provides coverage for Early Periodic Screening, Diagnosis, and Treatment (EPSDT).

EPSDT stands for:

  • Early: Assessing and identifying problems early
  • Periodic: Checking children’s health at periodic, age-appropriate intervals
  • Screening: Providing physical, mental, developmental, dental, hearing, vision, and other screening tests to detect potential problems
  • Diagnostic: Performing diagnostic tests to follow up when a risk is identified
  • Treatment: Control, correct, or reduce health problems found

This national program provides preventive and comprehensive care for children and young people under 21 who are enrolled in Medicaid. This program ensures that children and adolescents receive preventive, mental health, dental, developmental, and specialty healthcare services.

Healthcare policy is always changing. Our legislative work revolves around making sure that when changes occur, access to Medicaid remains available for our children and families. We also aim to make Medicaid easier for families to understand and navigate.

Other Legislative Priorities

In addition to Medicaid, we also advocate in support of:

ACE Kids Act

The Advancing Care for Exceptional (ACE) Kids Act (H.R. 3325/ S. 428) is designed to improve care for children with medical complexity in Medicaid, while also reducing program spending.

President Donald Trump signed the ACE Kids Act into law on April 14, 2019. We will be working with Children’s Hospital Association (CHA), the Centers for Medicare and Medicaid Services (CMS) and the Department of Health and Human Services (HHS) to finalize the details and implementation guidelines. The bill will be eligible for introduction at the state level Jan. 2022. In the meantime, we will be facilitating conversations with the Nebraska Legislature, as well as surrounding states, to address the benefits of ACE Kids Act for the region’s most vulnerable children.

The ACE Kids Act would expand access to patient-centered, pediatric-focused coordinated care models tailored for children with complex, chronic conditions. Multiple published studies show cost savings and improved quality of care for this population — which accounts for only 6% of the 37 million children in Medicaid, but more than 40% of the total cost of care for children — when enrolled in a coordinated care program.

ACE Kids would work within the existing structure of a state’s Medicaid program, including Medicaid Managed Care, which we have in Nebraska. The bill would allow for the creation of enhanced pediatric health homes and provide incentives for states to participate (each state would need to opt-in). The bill creates a national framework to improve data collection and drive quality, as well as accompany children who live out-of-state and must travel to Nebraska for their specialty care.

340B Drug Pricing Program

For 25 years, the 340B Drug Pricing Program has provided financial help to safety-net hospitals to manage rising prescription drug costs. The program allows 340B hospitals to stretch limited federal resources to reduce the price of outpatient pharmaceuticals for patients and expand health services to patients and the communities they serve.

The Children’s Health Insurance Program (CHIP)

The Children’s Health Insurance Program (CHIP) is a bipartisan effort to provide health coverage to children who fall above Medicaid eligibility levels, but struggle to afford private insurance. Together, CHIP and Medicaid provide health care coverage to more than 37 million children and have brought the rate of uninsured U.S. children to an all-time low, with 95% of all children insured.

Enacted in 1997 under the Balanced Budget Act and Title XXI of the Social Security Act, CHIP is a joint federal-state program designed with children’s needs in mind, including pediatric-specific benefits and appropriate provider networks. Out-of-pocket costs are capped at 5% of a family’s income in CHIP, which helps ensure low-income families have access to affordable care.

Children’s Hospital Graduate Medical Education (CHGME) Program

The Children’s Hospital Graduate Medical Education Payment (CHGME) program provides independent teaching children’s hospitals with federal funding to support the training of approximately 6,000 physicians annually.

CHGME provides federal funds to the 57 independent teaching children’s hospitals to help them train tomorrow’s pediatricians through the hospital’s residency programs.

After completing medical school, the pediatrician must complete a residency program that can take between 3 and 7 years, depending on the chosen field. During the residency program, these young pediatricians not only train under an experienced practitioner; they participate in research and provide critical access to care for underserved communities.

Disproportionate Share Hospital (DSH)

Medicaid Disproportionate Share Hospital (DSH) payments were created in the early 1980s and are statutorily required to provide financial support to hospitals that serve a large number of Medicaid and uninsured patients. Given that Medicaid remains the largest source of health insurance for children in the country, covering more than 37 million pediatric lives, it is clear that any efforts to cut DSH funding will negatively impact children’s hospitals. Medicaid DSH is scheduled to receive a $4 billion cut Oct. 1, 2019 due to a clause in the Affordable Care Act (ACA). It was assumed that DSH funding would no longer be necessary once all states expanded Medicaid. What wasn’t considered at the time was how significant DSH funding was to hospitals, like Children’s, who qualifies due to a higher-than-average Medicaid mix. On average, Medicaid pays 70 percent of the cost of care. DSH funding from the federal government helps to offset the cost of underpayment from Medicaid. There are two bills offered in the House of Representatives that seek to delay or repeal the scheduled cuts to Medicaid DSH- H.R. 3022 by Rep. Eliot Engel (D-NY) to repeal cuts and H.R. 3054 by Rep. Olson (R-TX) to delay the cuts for two years.

What To Do Next

For more information on legislative support at Children’s, contact Liz Lyons, Director of Advocacy & Government Affairs, at 402-955-4139 or

Liz Lyons Director Government Relations


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