Consumer Empowerment Closes Medicaid Member Care Gaps

I’m often surprised by the lack of awareness of consumer-directed care, also known as self-direction. It’s not new. In the 1990s, the Robert Wood Johnson Foundation awarded grants to develop ‘self-determination’ programs in 19 states. These successful projects evolved further into Medicaid demonstration programs, and then in 2005, the Deficit Reduction Act authorized two more avenues for states to offer a consumer-directed option. Since then, consumer-directed care has steadily grown, with more than 1.5 million people having self-directed their long-term services and supports (LTSS) within the past two years – an 18% increase in enrollment since 2019.

Consumer-directed care addresses some significant care gaps, yet many eligible individuals remain unaware that they qualify – or that consumer direction programs even exist. In turn, care gaps persist. Consumer-directed care can help fill the gaps experienced by some of our most vulnerable populations, including those in rural areas, those who face language barriers, and those with limited access to transportation or technology.

Cultural and geographical inequities

It’s recognized that the healthcare system broadly lacks the cultural competency to manage the care of diverse populations. Cultural competency is the ability to communicate effectively and empathetically with people from other cultures. Beyond communication, cultural competence includes understanding the religious and social tenets that may impact a person’s healthcare status. The lack of cultural competence is especially true for in-home care. There are various barriers to cultural competence that may inhibit an agency-assigned caregiver from providing the care or assistance an individual needs and wants. The homecare workforce shortage means there is not only a lack of workers in general, but also a lack of workers who speak the language of the person needing care and can accommodate their special needs. 

Differences in culture, language, religion, sexual orientation, and more can exacerbate systemic inequities and make it difficult for home care agencies to provide effective care tailored for each individual. Some barriers are more concrete, such as language barriers that inherently create difficulty in communicating care needs. Others are less visible, such as religious and social tenets that may impact a person’s healthcare status, including but not limited to dietary restrictions, medication usage, prayer timing, and provider gender preference. Culturally incompetent care can lead to lower quality, poorer patient outcomes, and higher costs. While these issues can be addressed by assigning culturally appropriate caregivers based on individual preference, home care agencies often lack the resources to do so, especially in light of ongoing workforce shortages.

Access to quality at-home care can also be limited for individuals who live in rural areas. According to the US Census Bureau, that includes more than 60 million Americans, or about one-fifth of the U.S. population. Yet on average, there are roughly 33 home health aides per 1000 older adults providing at-home LTSS in rural areas, versus 50 home health aides per 1000 older adults in urban areas, according to a study assessing the direct care workforce in rural areas. Consumers in rural areas disproportionately suffer from these shortages, with severely limited options.

Hospital readmissions

The U.S. sees around 13.2 million hospitalizations for people age 65 and older, which is more than any other age group. Individuals with chronic conditions or disabilities also tend to experience a higher rate of readmission due to the complexity of their care, among other factors. Being discharged into a home care setting, where consumers can be continuously monitored and cared for by a trusted caregiver, is ideal. Consumers with at-home care and assistance have a 15% lower hospital readmission rate compared to those who do not receive home care, with some studies showing a reduction in hospital readmission rates by up to 25% for patients with chronic conditions. These consumers also receive help from caregivers to follow personalized care plans, medication management, and emotional and social support. This can especially be helpful for individuals with chronic and complex conditions living in rural areas who require additional care touchpoints.

Staffing shortages

According to a Kaiser Family Foundation survey of state officials administering home- and community-based services (HCBS), every state reported care worker shortages in 2023, which were most common among home health aides, direct support professionals, and personal care attendants. One study by KFF found that individuals on HCBS waiting lists waited an average of 36 months to receive services in 2023. Individuals with intellectual and developmental disabilities waited the longest for services – 50 months, on average. Meanwhile, the average waiting period for other populations was as low as five months. Shortages of home care workers can have long-lasting and detrimental impacts on the most vulnerable populations, delaying or blocking access to essential care and support.

Consumer-direction is part of the solution to address gaps in care

While agency and institutionalized care are widely known, they are restrictive and do not allow consumers to choose who supports them and how. Consumers are typically assigned a new and unfamiliar caregiver regularly, where they must constantly reexplain their care needs. In contrast, consumer-directed care is a long-term care delivery model that provides Medicaid-eligible individuals with decision-making authority and direct responsibility to manage and direct their care, in their own homes, with the assistance of a support system. Consumers can recruit, hire, train, and supervise a caregiver they know and trust, such as a family member, to provide their care services. 

Amid ongoing shortages of home care workers, consumer direction ensures that individuals have immediate access to the care they need, regardless of whether they live in an urban, suburban, or rural area because they are tapping into a family and community network of caregivers that live nearby. As noted earlier, home care programs have also been shown to reduce the rate or severity of hospital readmissions for seniors and individuals with chronic complex conditions.

In addition to closing care gaps related to staffing shortages and hospital readmissions, consumer direction addresses longstanding inequities, as cultural competency is a key focal point. For example, an individual may have certain dietary restrictions that institutionalized care settings overlook. With consumer direction, individuals have the freedom to select a caregiver who speaks their language and shares their beliefs, interests, and culture, which can ultimately improve clinical outcomes for many who have historically suffered from health inequity and inferior treatment.

While enrollment in consumer direction programs has grown, more must be done to educate, amplify, and spread awareness to ensure that all eligible individuals learn about the benefits of this alternative to traditionally delivered agency and institutional care. Consumer direction has remained the best-kept secret in long-term care, and it’s time to reveal that secret to empower the most vulnerable and underserved populations.

Maria Perrin is the President & Chief Strategy Officer for PPL. Maria has worked with government healthcare programs for over 20 years and has expertise in whole-person care solutions. Previously, Maria was Chief Growth Officer and Strategy Officer for HMS / Gainwell, Chief Revenue and Marketing Officer for Therapy Brands, and SVP of Sales, Marketing, and Business Development for Performant. She is a Babson Diagnostics and Perx Health advisory board member and a Professor of Creative Business Leadership at Savannah College of Art and Design. Maria is a frequent speaker and writer on industry trends and was named a Healthcare IT Power Player by Becker’s Healthcare. Maria has a B.A. in Economics from the University of California, Los Angeles, and an MBA in Marketing and Finance from the University of Miami.