Making the Sandwich the Right Way:

Improving the Quality of Home- and Community-Based Services

The Health of Aging Populations Medicaid

My uncle did not kick her out, but he made it hard for the home health care worker to do her job. It’s just that he loved his wife of 60 years so much. And he had worked hard to care for her as she lost her mobility, her hearing, her eyesight, and her memory. He was used to doing things in his own way—the right way. So he could not help but give the home health care worker instructions on how to bathe her, how to make the sandwich, and where to put things. Eventually, we surmise, she got fed up or overwhelmed and just stopped showing up.

My uncle called his kids in frustration. They had talked him into getting home health aides in the first place. Finally, at age 85, he consented to some assistance a few days a week. He was fortunate that he could pay for it—his kids were all out of town. Dissatisfied with rotating staff from the service, he set about finding and hiring an aide directly and paying her the right way—through a payroll service.

And now he was on his own again.

This story came to my mind when the Fund published its latest report, Bundling, Benchmarking, and Beyond: Paying for Value in Home- and Community-Based Services. It made me appreciate how challenging it is to define, measure, and pay for high-quality long-term services and supports (LTSS) in community settings. And how their importance will only grow in the US.

The focus of the report is Medicaid, which pays for two-fifths of all LTSS care in the US. As a result of patient demand, court orders, and public policies, LTSS care has changed dramatically in the last 20 years. In 2000, only 30% of payments for long-term care in Medicaid was directed to services delivered in home- and community-based settings. By 2015, the figure was 55% and the proportion continues to rise.

This is what families want: care in the least restrictive and least institutional setting. And state Medicaid agencies have worked hard to arrange and pay for more services in those settings. But what do we know about the services being provided? How do we define them? Even if they occur in the least restrictive setting, we can’t say any home- and community-based service (HCBS) is a good HCBS. Can their appropriateness be assessed and their safety and quality be measured?  If this is challenging for the relatively simple home health aide services my aunt received, it is even more challenging for more comprehensive and complex services, like round-the-clock aides or habilitation therapy for people with a permanent disability.

These questions are becoming too big to be ignored: LTSS expenses nationally comprise 30% (or $158 billion) of Medicaid expenses and their share will increase as the US (and Medicaid beneficiary) population steadily ages. The Fund’s report, compiled by the Center for Evidence-based Policy, shows that some states are facing up to them.

The report first outlines a framework for how to think about grouping HCBS into episodes of chronic care, primary care, acute care, and those related to a particular procedure, and then describes pricing and paying for those services. It gives examples of efforts by officials in Arkansas and Colorado who put specific HCBS bundles into practice and summarizes what they learned in four areas: consistency and transparency, coordination of care, calculating payments, and capacity of Medicaid agencies and providers.

It is not enough to define and pay for services in the home and community if the services themselves are no good. But how do you assess their adequacy? My uncle’s standards were at once achingly high—make the sandwich the right way—and distressingly low—please show up.

The work on assessing HCBS quality lags far behind similar efforts in health care institutions and ambulatory care settings. Here the report summarizes frameworks developed in recent years as well as efforts in Tennessee to develop and implement its own framework. The authors conclude that any HCBS measurement effort should focus on the specific measures used—with a special emphasis on consumer- and family-centeredness, the methods for compiling them, and regular monitoring.

As outlined in another Fund report, many states have outsourced their LTSS organization and financing functions to Medicaid managed care organizations. They can’t outsource accountability and responsibility for quality though, and the consequences for patients and providers can be significant. Linda DeCherrie, MD, clinical director of Mount Sinai Health System’s Institute for Care Innovations at Home, said, “In New York City, we see great variability in the Medicaid managed long-term care programs and what they approve for services like hours of an aide and the ability to deliver and help fix wheelchairs.”

State Medicaid agencies have also experimented with making these decisions truly patient-centered. Consumer-directed programs based on the Cash and Counseling design give recipients a disability-adjusted voucher, which they can direct towards long-term care services and supports they need. It can work well—family friends of mine with a young adult with Down’s syndrome purchase companion time to help him achieve independence and navigate the community.  Without more support though, consumer-directed programs may only put Medicaid beneficiaries on the same footing as patients with independent resources to pay—leaving them to negotiate services and payments like my uncle.

Eventually my uncle gave up. Feeling alternately abandoned, angry and responsible, uncomfortable with another stranger in the apartment for more days of the week, and overwhelmed by the prospect of going through the process repeatedly, he reluctantly agreed to have his wife moved to a nursing home.

Can Medicaid do better? Can it do more than enroll long-term care recipients who then flounder through the system or outsource the policy issues to managed care companies that will rise to those challenges with varying responses of varying adequacy? Can states and researchers help define value and accountability for HCBS in ways that become industry standards, much like Medicare has done for inpatient care?

It is not easy to codify and promote value in HCBS. There are many ways to help with personal hygiene and many more ways to make a sandwich. But willing family caregivers like my uncle, the increasing numbers of elderly and disabled people, and the health care providers who serve them are all counting on states to do more.