Children with complex medical conditions often need care in pediatric hospitals outside of their home states. Some need that care right away. Yet the red tape for enrolling and vetting out-of-state hospitals and clinicians often delays the care these children need and makes it more difficult and expensive. That needs to change.

An estimated 2 million children living in the United States need the kind of care that is available only at a limited number of U.S. hospitals — diagnosis and treatment of rare and ultra-rare diseases and disorders; complex treatment and surgery for congenital problems or serious traumatic injuries; organ transplantation; and more. The care for many of these children is fully or partly covered by Medicaid, whose joint federal-state structure perpetuates the delays in their treatment.

Before a clinician can provide Medicaid-related care, federal law requires that she or he must undergo a background screening before enrolling in a state’s Medicaid program. State Medicaid agencies are responsible for carrying out both screening and enrollment. Although the goal — detecting and weeding out providers who might pose fraud or abuse risks — is a good one, the process can impede a child’s access to care because states regularly require providers already enrolled and in good standing in their home state, or through Medicare, to go through subsequent screens in order to treat patients from another state.

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Here are a few recent examples of problems relating to this issue that we have seen at our hospital, Boston Children’s Hospital:

  • A nationally recognized specialty surgeon was asked to provide a copy of his original Social Security card — not something most Americans can put their hands on at the drop of a hat — in order to enroll in another state’s Medicaid program, even though the Centers for Medicare and Medicaid Services has instructed states to stop asking for the Social Security card.
  • A child with a significant narrowing of the esophagus required dilation every other week. That intensive procedure involves passing a tube down her throat and into her esophagus. The child was scheduled to travel to Boston Children’s for surgery to fix the problem. But her care was delayed for months because the lead surgeon had to be screened and enrolled in the child’s state first, a requirement that was not explained until days before the patient’s scheduled arrival in Boston. Although the patient eventually had her surgery here, the delay resulted in additional uncomfortable dilations in her home state.
  • A child battling a rare malformation of the blood vessels in his colon and rectum that caused regular bleeding came to Boston Children’s for an evaluation. The patient’s multidisciplinary team recommended surgery to remove a portion of the colon, a procedure that could cause fatal bleeding if not handled properly. Lack of clarity in the enrollment and screening process delayed the operation. As the patient waited, the bleeding intensified, requiring several blood transfusions a week. When the patient eventually received care at our hospital, the unnecessary delay caused a worsening of the condition, heightened anxiety for the parents and a need for higher-level and more costly care.
  • Some states have asked our hospital to provide documentation about senior hospital leaders and even members of the board of trustees, such as driver’s licenses and other personally identifiable information, as part of the screening, enrollment, and billing process.

Our hospital isn’t alone. Other children’s hospitals that treat a sizeable number of out-of-state children also face barriers like these that ultimately impede patients’ access to care and payment to providers. Changes at multiple levels are needed to fix these problems.

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A broken process

Current laws and regulations allow states to rely on screening done by Medicare or other state Medicaid programs. In its guidance on enrolling and screening providers, CMS has reminded states to avoid unnecessary or duplicative screening. Being vetted by one state — typically a health care provider’s home state — or by Medicare should suffice, and that information should be shared with other states.

Yet many states still require providers to go through the process again before allowing care to move forward, even though they have been approved and enrolled in their home state and Medicare. In other cases, states allow medical care to be provided concurrent with the screening and enrollment process, but providers must then work for months to navigate the process in order to be paid.

Even though CMS has mandated the screening and enrollment process, the rules and procedures vary from state to state. Complying with them often requires intimate knowledge of each state’s processes. Barriers include complicated and lengthy applications, processing applications only via U.S. mail, and brief enrollment periods that hinder follow-up care and require re-enrollment. These obstacles can delay a child’s access to care.

They can also jeopardize payment to the provider, particularly if the process stretches beyond a state’s payment window. And none of these impediments on highly reputable providers already enrolled in their home states keep bad actors out of the system.

Fixing the screening and enrollment problems

Boston Children’s Hospital and several other children’s hospitals that frequently care for children from outside their home states have been working toward a multifaceted policy solution that seeks to streamline the screening and enrollment process for Medicaid by creating a federal pathway for providers and also by reforming current law, regulations, and systems.

To address deficits in the current law, Sens. Chuck Grassley (R-Iowa) and Michael Bennet (D-Colo.) recently introduced the bipartisan Accelerating Kids’ Access to Care Act. It would create a streamlined Medicaid screening and enrollment pathway — potentially atop the current Medicare Provider, Enrollment, Chain and Ownership System — for clinicians who fall into the lowest category for potential fraud and abuse. Clinicians who are enrolled through that system would be eligible for five years with participating state Medicaid plans and would be able to provide care and necessary follow-ups as well as order all necessary prescriptions.

This act aligns with ongoing CMS efforts to streamline the Medicare enrollment system and better align the needs of Medicare and Medicaid by making this system more conducive for state use. In February, the president’s fiscal year 2019 budget request for the Department of Health and Human Services included a provision that requires providers who receive federal funding and who are enrolling in Medicare, Medicaid, or the Children’s Health Insurance Program “to use centralized CMS screening as necessary under federal law.” It goes on to note that state Medicaid agencies can use Medicare screening to prevent “duplicative screening.”

Under the Accelerating Kids’ Access to Care Act, states would be able to conduct additional oversight of providers who are successfully enrolled through the streamlined pathway, but would not be able to add additional screening and enrollment requirements. States would, however, maintain their traditional role in authorizing (or denying) out-of-state care and determining payment rates. The goal of the bill is quite simple: conduct one rigorous screening and do it well to prevent fraud and abuse and eliminate unnecessary impediments to patient care and added costs that are common today.

As Congress considers the bill, others can take additional steps to improve the situation. For example, CMS could issue updated direction to states that amplifies current regulations that allow and encourage states to use screening and enrollment by Medicare or a provider’s home state, and also persuade states to stop following outdated policies such as seeking copies of Social Security cards.

CMS could also work with states, children’s hospitals, and Medicaid managed care organizations to develop standardized tools and processes to accelerate screening and enrolling out-of-state providers. These efforts could include creating a universal protocol for such cases; designating specific staff members in state Medicaid offices who are responsible for processing cases involving out-of-state care; producing model contracting templates, such as sample case agreements; and establishing common applications, data standards, and documentation requirements.

Establishing best practices and standardized templates would make it easier to agree in advance on the core needs for referrals to out-of-state clinicians and hospitals and expedite them while minimizing the amount of time spent by staff on all sides in negotiating out-of-state care arrangements.

None of these fixes would be complete substitutes for creating a streamlined federal pathway, but each would help address many of the most resource-intensive barriers as Congress deliberates further.

Children on Medicaid with complex medical conditions face unnecessary challenges getting access to essential care from out-of-state clinicians and hospitals, largely because of red tape in the process of enrolling providers into the Medicaid system. Reforming this process will make it easier for children to get the care they need.

Nick Manetto, a principal at Faegre Baker Daniels Consulting, is the federal government relationship representative for Boston Children’s Hospital. Joshua Greenberg is the hospital’s vice president of government relations and Mathieu Gaulin is its director of health affairs.

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