Expanding Care Through Coordination

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The federal government seeks to improve out-of-state health services for children on Medicaid.

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A child with a blood vessel abnormality of the colon required emergency surgery that was only available at an out-of-state hospital. Unfortunately, his treatment was delayed due to barriers in his Medicaid coverage. As he and his parents waited for this life-saving care, the child’s condition worsened.

For vulnerable patients like this child, access to health care is often a life or death situation. According to some estimates, about 2 million children on Medicaid face this reality every day. Although most children receive the care they need under their state’s Medicaid plan, some of these children lack access to in-state care because they suffer from “medically complex conditions.”

In response, the federal government requested public comments on how state Medicaid programs can better coordinate care with out-of-state providers.

The comment request, which ended earlier this month, came in preparation for a new Medicaid option expected to become available to states in October 2022. This new Medicaid plan would help states provide “a comprehensive system of care coordination” by paying for certain out-of-state care for children with medically complex conditions.

Medically complex conditions are disorders or diseases that impact three or more organ systems. These conditions cause long-term, diminished cognitive or physical functioning and require sophisticated treatment and care to manage. Qualifying chronic conditions include health issues such as HIV/AIDS, severe autism, muscular dystrophy, and mental illness. States that implement the 2022 plan would also cover children who have rare, life-limiting pediatric diseases or at least one illness that limits their daily activities.

Under the new plan, states would establish “health homes” for these Medicaid-eligible children with complicated medical needs. Health homes would help pediatric patients and their families arrange and manage necessary out-of-state care. The patient’s state Medicaid plan would then cover the cost of cross-border services.

Health home is a term of art that refers to a Medicaid care coordinator, which can either be a person or an organization. Health homes range from individual providers, such as a pediatrician, to a group of specialists at a children’s hospital.

Patients or their families select a health home to “integrate and coordinate all primary, acute, behavioral health, and long-term services and supports to treat the whole person.” States, however, decide which providers are eligible for health home status.

Providers qualify for health home status based on whether they have the appropriate resources to deliver medical services to the patient. Above all, health homes must demonstrate that they can organize and coordinate a patient’s medical care, from primary to specialty services.

Because of their ability to manage patient needs better, health homes can improve access to quality health care, making them an effective care coordination model for state Medicaid programs.

Under the 2022 Medicaid option to establish health homes, states would be required to submit a plan to the Centers for Medicare and Medicaid Services (CMS) detailing how the state would work with health homes to ensure “prompt and timely access” to out-of-state care for children with medically complex conditions.

To encourage states to pursue the new plan, CMS has agreed to match program costs during the first two fiscal year quarters of a state’s health home program by increasing payments to participating care coordinators.

Although the addition of health homes to manage care is a new feature of the 2022 option, these types of out-of-state payment arrangements are not new to Medicaid.

Currently, Medicaid provides coverage for some children through early and periodic screening, diagnostic, and treatment (EPSDT) plans.

EPSDT plans guarantee coverage to beneficiaries under age 21 for medically necessary services that are performed both in state and out of state. Furthermore, states with EPSDT plans must pay for medically necessary services that are performed out of state “to the same extent that it would pay for services furnished within its boundaries.”

But some health care professionals assert that EPSDT plans have been ineffective in expanding access to care.

These providers argue that the current screening processes to ensure that medical workers meet the required standards delay access to care, detrimentally impacting some patients’ health. Although these providers acknowledge that compliance checks protect against fraud or abuse of federal health programs, they urge the federal government to change existing regulations to streamline the coverage process for patients.

Other patient advocates agree, arguing that Medicaid reform should reduce the “administrative burdens that create real live barriers to access by children and youth with special health care needs.”

In its request for public comments, CMS assures that it will use providers’ feedback to address current problems of care coordination models and develop best practices for states to manage out-of-state services through health homes. In fact, the agency must issue state guidance on these topics by the fall.

For some of the 35 million children enrolled in Medicaid and in need of complex treatment for rare health complications, the anticipated 2022 coverage option could really mean the difference between life and death.