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.
Research
Written by: Jill Jaracz
The 2010 Affordable Care Act offered states an opportunity to expand eligibility for Medicaid, a health care program paid for jointly by the federal and state governments that covers care for low-income children, adults, people who are pregnant or have a disability, and older adults. The expansion extended Medicaid coverage to all low-income adults earning up to 138% of the federal poverty level—for individuals, that’s roughly $20,120 in 2023. To cover the costs, the federal government would pay for 90% of the program, and states would have to pay the remaining 10%.
The result was a significant increase in the number of people covered by Medicaid. Before the expansion, 56.5 million people were enrolled in Medicaid and the closely associated Children’s Health Insurance Program. By May 2023, those programs enrolled 93.8 million people, according to the Kaiser Family Foundation. That’s 1 in 5 people (and 4 in 10 children) in the United States. Under the original law, states that chose not to expand their eligibility criteria would risk not receiving any federal funding for any of their Medicaid programs. But in 2012, the Supreme Court overturned that penalty for not expanding eligibility, and made it fully optional for states.
While 40 states and Washington D.C. have adopted expansion, 10 have not. Most states that haven’t expanded have less health care coverage than the national average. Foothold Technology used data from the Kaiser Family Foundation to look closer at each of the 10 states that haven’t expanded Medicaid to learn about their ongoing health care challenges. Data points on Medicaid and Children’s Health Insurance Program enrollment are also included. The difference in enrollment from before the Affordable Care Act compared to May 2023 is calculated based on total enrollment per 100 residents in the state.
At the beginning of 2014, 24 states and Washington D.C. expanded their coverage immediately. Since then, another 16 states have followed suit. In March 2023, North Carolina became the most recent state to enact Medicaid expansion legislation, but implementation may not come until 2024.
In the remaining states, the Kaiser Family Foundation estimates that 1.9 million people who earn too much to receive government subsidies to buy private health insurance would be covered by Medicaid if it were expanded. States that haven’t adopted expansion cite economic factors and federal governmental overreach as reasons why they won’t. But Kaiser reviews of studies on Medicaid expansion have found people in states that did expand eligibility have better health, which is good for the states’ health care providers and overall economies.
– Medicaid and CHIP enrollment, May 2023: 1.2 million (23.7 per 100 people, 18.6% below national average)
– 43.4% increase in enrollment from before Affordable Care Act
Alabama ranks 42nd in the nation in terms of overall health system performance, according to the Commonwealth Fund. Heart disease is the state’s leading cause of death and the state has the third-highest heart disease death rate in the nation, with 247.5 deaths per 100,000 people, according to the Centers for Disease Control and Prevention. Some experts say this rate doesn’t have to be so high—in 2021, the Cleveland Clinic found that 90% of heart disease cases could be prevented through diet, exercise, and not smoking.
To combat the state’s health challenges, the University of Alabama at Birmingham launched a public-private partnership called Live HealthSmart Alabama in 2019. The organization provides mobile health screenings and produce markets, accessible physical activities, and health and wellness education.
– Medicaid and CHIP enrollment, May 2023: 4.8 million (21.4 per 100 people, 31.8% below national average)
– 13.0% increase in enrollment from before Affordable Care Act
When pandemic-related Medicaid protections ended in early 2023, about 900,000 Floridians were dropped from Medicaid rolls, a total that could climb to 1.5 million, according to NPR. This could cause 388,000 citizens to lose not only their health coverage but also any government aid to purchase a new insurance plan, according to Kaiser.
The state developed a State Health Improvement Plan for 2022-2026 to focus on seven health concerns and partner with local organizations to tackle them. These priority areas include Alzheimer’s and dementia, chronic diseases, maternal and child health, mental health and substance abuse, injury and violence prevention, and transmissible diseases. The plan also seeks to address social and economic barriers to good health, with goals to expand education, improve access to services, and promote healthy lifestyles.
– Medicaid and CHIP enrollment, May 2023: 2.5 million (23.2 per 100 people, 21.3% below national average)
– 50.8% increase in enrollment from before Affordable Care Act
In July 2023, Georgia’s Department of Community Health launched Georgia Pathways to Coverage, an expansion of Medicaid coverage for uninsured low-income adults aged 19 to 64. The program comes with the requirement that citizens have a job, take job training, or participate in community service, or are going to school at least part-time for at least 80 hours per month. This caveat makes Georgia the only state to have a work mandate for this Medicaid program.
Georgia’s program does not qualify for federal funding, so the state will be paying $2,490 per enrollee versus $496 if the state had implemented Medicaid expansion, according to CNN. The state says it has budgeted for 100,000 enrollees in the first year, although it had approved only 265 applications in its first month, ABC News reported.
– Medicaid and CHIP enrollment, May 2023: 472,492 (16.1 per 100 people, 75.0% below national average)
– 23.1% increase in enrollment from before Affordable Care Act
If Kansas Gov. Laura Kelly—a Democrat—had her way, the state would already have adopted Medicaid expansion. However, a Republican-led state legislature did not include her proposal in its fiscal year 2023 budget and also didn’t take up an expansion bill she introduced. In June 2023, the governor again called for expansion, citing the state’s need for increased mental health coverage.
Kansas ranks last in the country for prevalence of mental illness and access to care, according to a 2023 report by Mental Health America. The governor says that expanding Medicaid would provide affordable mental health and substance abuse treatment to 150,000 more Kansans, of whom one-third are already in need of those services.
– Medicaid and CHIP enrollment, May 2023: 791,409 (26.9 per 100 people, 4.6% below national average)
– 30.7% increase in enrollment from before Affordable Care Act
The fact that Mississippi has not adopted Medicaid expansion may not be a surprise. When the federal Medicaid program was enacted in 1965, Mississippi didn’t implement it until 1969—and was one of the last states to do so. The state legislature argues against expansion on the grounds that it would be too expensive to implement.
Mississippi struggles with health care—it ranks last in the nation for health system performance, according to the Commonwealth Fund. The state has low marks for preterm birth rates as well as deaths from breast and cervical cancer. It also ranks last in premature deaths from treatable causes and second-to-last for premature deaths from preventable causes.
– Medicaid and CHIP enrollment, May 2023: 1.3 million (25.1 per 100 people, 12.3% below national average)
– 34.2% increase in enrollment from before Affordable Care Act
In South Carolina, Medicaid covers 1 in 8 adults aged 19 to 64 and 47% of births. The state has committed to some extension of the program, specifically 12-month postpartum coverage.
Health care is a challenge in South Carolina, as 6 in 10 adults have at least one chronic disease, and 4 in 10 have more than one, according to the South Carolina Department of Health and Environmental Control. Chronic diseases, including heart disease, diabetes, stroke, and cancer, account for nearly 57% of deaths in the state. In response, Clemson University and the Medical University of South Carolina have partnered for an initiative called Healthy Me—Healthy SC that provides educational programs, health screenings, vaccinations, a mother’s milk bank, and a pain rehab program.
– Medicaid and CHIP enrollment, May 2023: 1.8 million (25.7 per 100 people, 9.5% below national average)
– 34.1% increase in enrollment from before Affordable Care Act
Tennessee is ranked 46th in the nation for health care, earning low marks for avoidable emergency-room visits and premature deaths from treatable or preventable causes, according to the Commonwealth Fund.
The state’s mainly rural geography—78 of its 95 counties are rural—suffers from a lack of health care opportunities. Since 2010, 13 of 16 hospital closures in the state have been in rural areas. To reach people in those areas, the University of Tennessee Health Science Center launched a mobile health unit in June 2023 that can provide primary care, prenatal care, mental health care, chronic disease management, and HIV care services.
– Medicaid and CHIP enrollment, May 2023: 6.0 million (19.8 per 100 people, 41.8% below national average)
– 25.0% increase in enrollment from before Affordable Care Act
In 2022, about 1 in 6 Texans were uninsured, representing the highest rate in the nation, according to the Census Bureau. However, that rate may rise again as pandemic-related protections for Medicaid recipients expire. Over 500,000 people have lost Medicaid coverage since April 2023, according to the Texas Tribune.
The state government will likely not enact a plan anytime soon. Although 69% of Texans support Medicaid expansion, some state leaders, including Gov. Greg Abbott and Lt. Gov. Dan Patrick, are opposed to the program, despite the fact that the state could receive as much as $5.4 billion in federal aid to help fund it.
– Medicaid and CHIP enrollment, May 2023: 1.5 million (24.6 per 100 people, 14.2% below national average)
– 43.4% increase in enrollment from before Affordable Care Act
Wisconsin is the only state in the Great Lakes region that hasn’t signed on to Medicaid expansion, but Democratic Gov. Tony Evers is trying. Evers included Medicaid expansion in his 2023-2024 state budget proposal, but the state legislature’s Joint Finance Committee voted to remove it.
Wisconsin ranks 49th in terms of public health funding—its $72 per capita is $44 less than the national average, according to United Health Foundation. The state faces challenges with excessive drinking and fentanyl overdoses, and people of color have disproportionate numbers of lower birth-weight babies compared to white residents.
– Medicaid and CHIP enrollment, May 2023: 84,685 (14.6 per 100 people, 93.2% below national average)
– 25.6% increase in enrollment from before Affordable Care Act
Medicaid covers 1 in 14 adults and 1 in 4 children in Wyoming, according to the Kaiser analysis. Expansion would provide an additional 15,200 people the opportunity to have health coverage, 6 in 10 of whom live below the poverty line but don’t currently qualify for help.
In 2021, state legislators started introducing bills to implement the expansion, but the bills died for three subsequent years, even though the state’s population is in favor of it, according to Wyoming Public Radio. The state’s aging population has challenges with chronic diseases. For instance, more than 2 in 5 adults aged 65 and older have high blood pressure, the 2023 Wyoming Healthy Aging Data Report found.
Data reporting by Emma Rubin. Story editing by Jeff Inglis. Copy editing by Tim Bruns. Photo selection by Clarese Moller.
HCBS requires more tracking, coordination, and communication across providers and programs than ever before.
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