I am often struck 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 were further developed into the Medicaid Demonstration Program, and in 2005, the Deficit Reduction Act authorized two additional means for states to provide options for consumers. Since then, consumer-directed care has grown steadily, with more than 1.5 million people voluntarily receiving long-term services and supports (LTSS) in the past two years. This is an 18% increase in enrollment since 2019.
Although consumer-directed care addresses several critical care gaps, many eligible patients remain unaware that they are eligible or that consumer-directed programs even exist. As a result, gaps in care remain. Consumer-driven care can address the gaps experienced by the most vulnerable populations, including those in rural areas, those facing language barriers, and those with limited access to transportation and technology. Help fill in.
cultural and geographic inequality
It is recognized that health systems broadly lack 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 competency includes understanding religious and social tenets that may impact an individual's health status. Lack of cultural competency is especially true in home care. There are many barriers to cultural competency that can prevent government-appointed caregivers from providing the care and assistance that individuals need and desire. The home care workforce shortage means not only a general shortage of workers, but also a shortage of workers who speak the language of those in need of care and who can address their special needs.
Differences in culture, language, religion, sexual orientation, and more can exacerbate systemic inequalities and make it difficult for home care agencies to provide personalized and effective care. There are also more specific barriers, such as language barriers, which inherently make it difficult to communicate the need for care. Some are less visible, such as religious and social tenets that can influence an individual's health status, such as dietary restrictions, medication use, timing of prayers, and gender preferences of health care providers. Culturally inappropriate care can lead to poor quality, poor patient outcomes, and increased costs. These issues can be addressed by assigning culturally appropriate caregivers based on individual preferences, but home care agencies lack the resources to do so, especially given ongoing workforce shortages. often.
For those living in rural areas, access to quality home care may be limited. According to the U.S. Census Bureau, this includes more than 60 million Americans, or about one-fifth of the U.S. population. However, a study evaluating the rural direct care workforce found that there were approximately 33 home health aides providing home LTSS per 1,000 older adults in rural areas, compared to approximately 33 for every 1,000 older adults in urban areas. The average rate is about 33 per 1,000 elderly people, compared to 50 per 1,000. Rural consumers are suffering severely from these shortages and have very limited options.
Readmission
Approximately 13.2 million people over the age of 65 are hospitalized in the United States, more than any other age group. People with chronic illnesses and disabilities tend to have higher readmission rates due to complexity of care, among other factors. Ideally, consumers would be discharged to a home care facility where they would be continuously monitored and cared for by a trusted caregiver. Studies have shown that consumers who receive home care and assistance have 15% lower readmission rates compared to consumers who do not receive home care, and that rehospitalization rates for patients with chronic conditions can be reduced by up to 25%. be. These consumers also receive assistance from caregivers to follow personalized care plans, medication management, and emotional and social support. This is especially helpful for people who live in rural areas and have chronic and complex conditions that require additional care touchpoints.
shortage of human resources
A Kaiser Family Foundation survey of state employees who manage home and community-based services (HCBS) found that states will report a shortage of caregivers in 2023, with the shortage expected to include home health aides, It was most common among direct support professionals and personal care workers. One study by KFF found that people on the HCBS waiting list will wait an average of 36 months to receive services in 2023. People with intellectual and developmental disabilities waited the longest for services, an average of 50 months. Meanwhile, the average wait time for other populations was only 5 months. A shortage of home care workers can have long-term negative effects on the most vulnerable people, delaying or preventing them from accessing the care and support they need.
Consumer orientation is part of the solution to address the care gap
Institutional or institutionalized care is widely known but is restrictive and does not allow consumers to choose who supports them and how. Consumers are typically assigned new and unfamiliar caregivers on a regular basis, where they must constantly re-explain their care needs. In contrast, consumer-directed care is a long-term care delivery model that gives Medicaid-eligible individuals decision-making authority and direct responsibility to manage and direct their care in their own home, with the assistance of a support system. . Consumers can recruit, hire, train, and supervise caregivers they know and trust, including family members who provide care services.
As the shortage of home care workers continues, consumer guidance is ensuring individuals have immediate access to the care they need, whether they live in an urban, suburban, or rural area. This is because we leverage the home caregiver's family and community networks. near. As previously mentioned, home care programs have also been shown to reduce readmission rates and severity in older adults and people with chronic complex illnesses.
In addition to closing gaps in care related to staffing shortages and readmissions, consumer orientation also addresses long-standing inequalities, as cultural competency becomes a key focus. For example, an individual may have specific dietary restrictions that are overlooked by an institutional care facility. Consumer direction gives individuals the freedom to choose caregivers who speak their language and share their beliefs, interests, and culture, thereby ensuring that individuals have historically suffered from health inequalities and poor treatment. could ultimately improve clinical outcomes for many people.
Participation in consumer guidance programs is increasing, and education, awareness, and dissemination efforts are needed to ensure that all eligible individuals understand the benefits of this alternative to traditional agency and facility care. More work needs to be done. Consumer orientation remains the best-kept secret in long-term care, and it's time to reveal it to empower the most vulnerable and underserved populations.
Maria Perrin is President and Chief Strategy Officer of PPL. Maria has worked in government healthcare programs for over 20 years and has expertise in whole person care solutions. Previously, he served as Chief Growth Officer and Strategy Officer for HMS/Gainwell, Chief Revenue and Marketing Officer for Therapy Brands, and Senior Vice President of Sales, Marketing, and Business Development for Performant. She is an advisory board member for Babson Diagnostics and Perx Health and a professor of creative business leadership at Savannah College of Art and Design. Maria frequently speaks and writes about industry trends and was named a Healthcare IT Power Player by Becker's Healthcare. Maria holds a BA in Economics from the University of California, Los Angeles and an MBA in Marketing and Finance from the University of Miami.
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