Home and community based services (HCBS) have garnered an uptick in focus and funding over the last few decades, and that trend is likely to continue as the need for community-based services increases. Medicaid enrollment is expected to reach 86 million over the next five years, which includes 11 million individuals living with disabilities. Some projections estimate that GDP expenditures for long-term care services will jump to 1.7 percent by 2030 in the U.S. As HCBS increasingly takes the place of institutions as the preferred care system for Medicaid beneficiaries, I/DD professionals will be at the forefront of this transition.
HCBS is a form of long term services and supports (LTSS) for individuals living with disabilities that are also Medicaid beneficiaries. Historically, these supports have been delivered primarily in institutional settings, like I/DD care facilities, but HCBS take place in the home or community. Recipients often have chronic conditions that impede their ability to live independently. Rather than supporting individuals in isolated settings, HCBS brings services to a familiar environment that promotes person-centered care.
This model aims to address the medical and social services needs of individuals with disabilities. These services can take the form of case management, adult day programs, meal delivery programs, transportation, house cleaning, and safety checks. Since HCBS is a branch of Medicaid benefits, states play a large role in deciding which services are funded. Some services are federally mandated and others are offered at the states’ discretion. Within each state, lead agencies and service providers coordinate care.
Since home and community-based services are part of a state’s Medicaid program, they are often funded by state waivers. A waiver funds additional services for certain communities that complement or supplement Medicaid services. Recipients must be medically and financially eligible to receive the service, and eligibility requirements for waivers may differ from eligibility for a state’s Medicaid services.
Each state develops their own waiver system based on their population, funding, service structure, and goals. They can offer as many waivers as they want, and to date, there are more than 300 HCBS waiver programs in the U.S. States can also use waiver “authorities” to limit the number of beneficiaries or target certain populations.
As an example of the waiver system in practice, Washington state offers five waivers that are tailored to specific populations that need extra support. These include Basic Plus, Children’s Intensive In-home Behavioral Supports (CIIBS), Community Protection, Core, and Individual and Family Services (IFS). The Basic Plus waiver provides alternative placement for individuals with I/DD who want to live with family or on their own.
The primary benefit of HCBS is that individuals can live and receive care in a familiar environment. In a home or intimate residential community, they have more independence and autonomy to build the lives they want. That autonomy includes their preferences for cultural and spiritual support. It also includes the ability to obtain employment, budget their finances, set career goals, manage their schedule, and even start or finish school.
Individuals are also able to better integrate with their communities and develop a strong sense of belonging. Community-based care enables them to develop relationships with others, sharpen their social and emotional intelligence, and get support from family and friends. They can also opt for family members to be paid caregivers.
Community-based services are also generally more cost effective than institutional care. In fact, the Center for Medicare and Medicaid services estimates that HCBS is less than half the cost of residential care.
The benefits of home and community based care are numerous, but this model is not without its drawbacks. For example, there is a shortage of qualified caregivers and direct service professionals, and many caregivers suffer from burnout. Families may remain on wait lists for months, and are forced to find other resources for care. Additionally, non-family caregivers may not have easy access to remote locations, particularly in inclement weather.
Another challenge is the potential for cultural barriers or bias, especially during the assessment process. Available caregivers may not be fluent in an individual’s language. They also may be unfamiliar with an individual's cultural customs, which can cause confusion or distress to both parties and inhibit the collection of accurate data.
Despite its challenges, HCBS is gradually replacing institutionalization as the primary form of LTSS. HCBS spending jumped from 10 percent of LTSS spending in 1988 to 27 percent in 2000 and 55.4 percent in 2017. In contrast, LTSS spending for institutional settings dropped from 90 percent in 1988 to 43 percent in 2016. This shift is known as rebalancing. The government, as well as advocacy organizations and families, have recognized the high social and fiscal costs of institutional care.
In an effort to help beneficiaries transition back into their homes and communities from institutions, states are being given funding for the Money Follows the Person (MFP) program. The MFP program launched in 2005, and funding extends to 2023. Plus, states can use rollover funds through 2027. In short, MFP works to improve the quality of community-based care and eradicates barriers in state laws that prevent individuals from choosing to receive care from within their communities instead of an institution.
The need for HCBS is estimated to increase with the uptick in enrollment of beneficiaries, and there are several implications for that growth: the need for caregivers and Direct Service Professionals has increased, states must now meet higher care standards, and supported employment is becoming an increasingly common component of HCBS.
The new standards for community-based care must be met by states by 2023 in order to continue receiving Medicaid funding. Mandatory changes include:
The overarching goal of these changes is to improve the experience of individuals and outcomes. More specifically, they aim to protect the rights of beneficiaries, expand the pool of choices for care, and ensure that HCBS services are genuinely integrated into the community.
Another big change is the implementation of electronic visit verification (EVV) for caregivers. EVV is a web-based application that caregivers use to verify their visits. The system is meant to ensure that individuals get the care they need and guards against potential fraud and disruptions in care.
Finally, demand for supported employment services is growing and can be funded by certain waivers. Supported employment enables individuals with I/DD to work in community-integrated jobs. They also receive the support necessary to excel at their job and earn fair compensation. Individuals who participate in supported employment often report a higher quality of life and increased engagement with their broader work community. As all of these changes take root, the hope is to improve the quality of HCBS while enabling individuals to integrate fully with their communities.
HCBS requires more tracking, coordination, and communication across providers and programs than ever before.
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