I worked for CMS. Even I struggle to help family navigate dual eligibility

Three months ago, my aunt Margaret had a stroke. Days before, she was repainting her bathroom and driving herself. Now, she needs help with dressing and getting in and out of bed, and our family is grappling with the fact that this fiercely self-sufficient woman will never live independently again.

This health crisis has been compounded at every turn by failures of the health care system — failures that are particularly infuriating to me because I have devoted my life to solving these very problems. I previously served as chief strategy officer at the Center for Medicare and Medicaid Innovation, and my aunt is part of a group for whom policymakers (including me) have long sought to improve care: She is eligible for both Medicare and Medicaid. The roughly 12.5 million Americans with “dual eligibility” are among the most high-need patients served by the health care system, qualifying for Medicare due to age or disability and qualifying for Medicaid based on income. They make up 17% of the Medicare population but account for 33% of Medicare spending.

Theoretically, people with dual eligibility have the best possible, most comprehensive coverage, but in practice, they ping-pong around a system that doesn’t work for them, ending up with far less than they need and are entitled to. My aunt’s experience exemplifies this fragmentation. Time and again, I found myself telling family members “this is not how it’s supposed to work” and sometimes even “I don’t think that’s legal.” There were obstacles even my comfort with the system could not overcome. It made clear to me just how impossible this system is to navigate.

Our challenges began with discharge planning. At the end of Margaret’s hospitalization, we should have received proactive coordination to help us manage what comes next. Instead, our family was left to investigate rehabilitation options on our own. Thankfully, I knew that Medicare has a great Care Compare tool that allows patients and families to compare facility quality. After reviewing facility data and a lot of driving around, my family was able to find a rehabilitation facility that we felt good about.

It shouldn’t have been so hard. Research shows that the right financial incentives for hospitals result in better care transition programs, but specialists participate in these voluntary arrangements at lower rates than other types of providers. Indeed, my aunt’s hospitalization was just a few miles from a major integrated health system with a robust accountable care organization (ACO, an organization that voluntarily accepts increased responsibility for patient outcomes in exchange for financial incentives to coordinate care), but the specialty hospital where she received stroke care doesn’t participate and doesn’t share those incentives.

Our next issue was paying for the rehab stay. The facility told us that my aunt’s Medicare Advantage plan would cover only 20 days of rehabilitation. This seemed wrong. Medicare Advantage plans are required to cover services covered under Traditional Medicare, so why wouldn’t she have coverage for the full 100 days? When we spoke to the health plan, we learned that although “coverage” technically continues, massive copays kick in after 20 days. The result of this payment policy is that it’s clearly advantageous to switch back to Traditional Medicare. I can’t help but wonder whether that was the health plan’s goal, because it means that costly beneficiaries with disability or serious illness disenroll, reducing health plan costs. In our case, this worked. Because Margaret was in a facility, she was able to invoke a special enrollment period and make the switch back to Traditional Medicare.

That said, I wasn’t sure why we would need to pay copays at all: Medicaid pays the copays for dually eligible beneficiaries. Nevertheless, the facility told us that her Medicaid coverage “wouldn’t matter.” This is when we learned that the facility has a limit on the number of Medicaid beneficiaries it accepts and a waitlist for additional Medicaid spots. In order for my aunt’s Medicaid coverage to be useful, she would have to move to a different facility.

As if to add insult to injury, my aunt developed Covid-19. Then, while she was in isolation in the rehab facility, she received a letter from the state to her home saying that she needed to verify her Medicaid eligibility within 13 days or she would lose coverage. Proving eligibility for Medicaid feels like running a gauntlet, requiring information on health status along with income and assets going back five years. In our case, Medicaid also required my cousin to obtain a new power of attorney. (For some reason, the existing power of attorney that was accepted by the hospital didn’t meet the state’s requirements.) We were able to get a short-term extension so Margaret could eventually requalify, but when a loved one in their 70s is recovering from a stroke and Covid, the last thing you want to spend your time on is tracking down a notary and years of bank records. It’s also hard to imagine how people without family caregivers navigate this process.

There’s a saying that if everyone is accountable, no one is accountable, and I saw this in action. Theoretically, many organizations could have been accountable for my aunt’s outcomes: The hospital is responsible for readmissions within 30 days after discharge, the Medicare Advantage plan is responsible for medical (but not long-term care) costs, Medicaid is responsible (for copays and long-term care costs), and the rehab facility is responsible (for coordinating care for residents). In practice, it felt like everyone was just trying to get rid of her. I’ve seen this mentality previously, in my work at a Medicaid value-based care provider, where Medicaid case managers often said “that’s a Medicare service. I can’t help with that.”

It’s time to move beyond this piecemeal mentality. The Centers for Medicare and Medicaid Services has a goal that all Medicare beneficiaries will be in a care relationship with accountability for quality and cost by 2030 — a relationship with a provider who will do what it takes to get them the care they need across specialists and settings. Dually eligible beneficiaries need this kind of accountability, and they need it across both Medicare and Medicaid. Without this structure, every provider and payer a patient interacts with — and definitionally, dual eligible beneficiaries interact with a lot of them — has their own financial incentive, which is often an incentive to pass the buck. We need a single set of person-focused incentives. We need true, wholistic accountability.

These models do exist, but only in pockets: Today, only about 1 in 5 dual eligible beneficiaries are in this kind of integrated option.

CMS and Congress can make these options more widely available and stop plans that purport to offer integrated care but don’t actually deliver. Congress should move forward legislation (currently under consideration by the Senate Finance Committee) to increase scrutiny on look-alike plans, eliminate “coordination only” special needs plans, and expand the growth of fully integrated plans. The CMS Innovation Center should test accountable care approaches that integrate Medicare and Medicaid while allowing beneficiaries to remain in Traditional Medicare (such as by allowing Medicaid managed care organizations to take on accountability for Medicare costs).

Beneficiaries also need more resources to help them understand their choices. Enrolling in programs and finding providers across both Medicare and Medicaid involves a dizzying array of options (Traditional Medicare or MA? What is an ACO? Which Medicaid plan? How do I understand Medicaid waiver services?), and too often, people rely on brokers that don’t have their best interests in mind.

Progress for dual-eligible beneficiaries is challenging, because of the sheer number of entities involved — the federal government, states, health plans, providers, and most importantly, beneficiaries themselves. But we can’t afford to let this inertia overwhelm the need for change: 12.5 million dually eligible beneficiaries and their families, including mine, are depending on it.

Dawn Alley, Ph.D., is the former Chief Strategy Officer of the CMS Innovation Center. She is currently Affiliate Faculty at the Milken Institute School of Public Health at The George Washington University.