How Three States Made COVID-Relief Investments in Improving Home- and Community-Based Services

Ensuring that people with disabilities can live independently in their communities, with home care provided to maximize equal opportunities, full participation, and economic security, is a fundamental goal of the Americans with Disabilities Act (ADA). Likewise, older Americans today strive to age with dignity, and with care that enables them to thrive in their communities. To reach these goals, disabled¹ individuals and older adults need services and care provided in their homes and communities. Unfortunately, the cost of home- and community-based services (HCBS) is often out of reach for many individuals and families. Options exist for the wealthiest families through private paid programs, and for those with the lowest incomes, HCBS are available through Medicaid. However, the actual services available vary drastically from state to state, and many states have waiting lists to even access services through Medicaid. HCBS are rarely covered by private insurance and out-of-pocket prices are often out of reach.² Meanwhile, those in the care workforce are some of the lowest paid workers in the economy, largely due to the racist and sexist history of undervaluing care and care work in the United States.³

The challenge of finding affordable, accessible HCBS has been growing as baby boomers age,⁴ and the COVID-19 pandemic further exacerbated the care crisis. Approximately three million people receive HCBS through Medicaid waivers across all states and waitlists nationally total more than 665,000.⁵ When the pandemic hit in 2020, disabled people and older adults lost caregivers and services and were often forced to stay in institutional and congregate care settings longer with delayed transition plans.⁶ Simultaneously, the virus was spreading at uncontrolled rates through congregate settings, making homes the safest place someone could receive services.

The pandemic has made the daily struggle worse for people with disabilities, older adults, and their families around the United States. For example, during the height of the pandemic, Morgan Champion and her sister brought their 74-year-old father home from a memory care facility in Tallahassee, Florida. They worried for his well-being when they found him poorly cared for there once the lockdown lifted. Morgan and her husband made physical accommodations to their home and began to manage work, caring for their 2-year-old daughter, and caring for their 74-year-old father. They were quickly overwhelmed by responsibilities. While at one point they were relieved to learn they could apply for the help of a home health aide through Medicaid, they ended up on a waitlist, along with thousands of others.⁷

For another example, Caring Across Generations fellow John Adeniran, of Philadelphia, is managing his full-time job with caring for his mother, Elizabeth, who has early onset Alzheimer’s. She lives with him, and his remote job allows him to care for her, but between work, caregiving, medical bills, student loans, and a mortgage, time and finances are both tight. He has applied for in-home care through Medicaid, but has been discouraged by the challenges of applying and receiving support.⁸

As a result of the pandemic, and stories like these, Congress made efforts to address the needs of disabled people, older adults, their families, and care workers, primarily by increasing funding for HCBS programs in the states through the American Rescue Plan Act (ARPA). While this funding boost was sorely needed, it was a one-time allocation that will end without renewal, leaving states and families facing an uncertain future. However, a careful examination of how states used the ARPA funding boost to enhance HCBS can help provide a roadmap of how policymakers should move forward.

While this ARPA funding boost was sorely needed, it was a one-time allocation that will end without renewal, leaving states and families facing an uncertain future.

This report looks at how this increased funding was used at the state level in order to provide better, more accessible HCBS. The report begins with a brief account of Congress’s HCBS policy response during the pandemic. It then establishes a framework of priorities for improving HCBS, such as bolstering the caregiving workforce, developing its technological infrastructure, improving services, and supporting transitions from institutions to homes and community settings. It then uses that framework to analyze how three states—California, Illinois, and Georgia—used increased HCBS funding during the pandemic, and presents lessons learned. The report concludes with recommendations intended to provide guidance for the federal government and states as their work to expand and guarantee HCBS continues.

Background: HCBS Policy in Response to the Pandemic

While responding to the COVID-19 public health emergency, many states were able to use Medicaid emergency authorities to expand HCBS coverage, improve access, and support providers.⁹ Some of these changes began before the American Rescue Plan Act (ARPA) funds passed in early 2020 as the public health emergency triggered the emergency authorities. Other relief flowed to states in mid- and late-2020 through the initial pandemic relief packages passed by Congress. To help states address constituent needs during the COVID-19 pandemic, the Families First Coronavirus Response Act, amended by the Coronavirus Aid, Relief, and Economic Security (CARES) Act, authorized a 6.2-percentage-point increase in federal Medicaid matching funds for a wide range of purposes, including coverage of COVID-19 testing, vaccinations, and treatments.¹⁰

In March 2021, President Biden signed the American Rescue Plan Act (ARPA), which included a temporary ten-percentage-point increase to the federal medical assistance percentage (FMAP) for Medicaid HCBS to address the needs of families, care workers, disabled people, and older adults made more urgent by the pandemic. This funding for HCBS—approximately $12.7 billion—helped states to increase coverage, expand benefits, improve conditions for the workforce, and improve how funding operates in the state to pay for state Medicaid programs.

The funding in ARPA was developed to be a down payment on expanding HCBS with significantly more funding to follow in the Build Back Better agenda (which, unfortunately, has not moved forward). As such, the one-year increase was a drop in the bucket as compared to the total need, and was intended only to supplement existing spending and address more immediate needs. Specifically, guidance from the Centers for Medicare and Medicaid Services (CMS) spelled out that ARPA funding should be used for support “beyond what is available under the [state’s] Medicaid program as of April 1, 2021.” Per the guidance, ARPA funding could be used for activities to meet HCBS needs created by COVID-19 and activities to build state HCBS capacity and advance long-term services and supports (LTSS) reforms to better balance resources currently favoring congregate care to more evenly support HCBS. (This is because LTSS is covered by Medicaid for nursing homes, but optional for HCBS.)¹¹

Timeline for ARPA Funding of HCBS

When states first submitted and had their plans approved, the timeline was short. The increased state match was only in place for one year, and expired on March 30, 2022, but states originally had until March 31, 2024 to expend all funds. CMS twice extended the deadline for expending all funds, ultimately pushing it to March 31, 2025. The additional extensions for expending funds allows states time to strengthen their programs and fully implement the approved plans. Even with the extension, states had limited time for advanced planning, and the short timeline for receiving funds meant that states that had already been working on expansion plans, or who had stakeholders who had been working on such plans, were in better shape to innovate and make progress than other states. Questions about whether additional funding would continue after the timeline caused some states to make narrower choices in how to spend the increased funds than they might have with ongoing funding.

Questions about whether additional funding would continue after the timeline caused some states to make narrower choices in how to spend the increased funds than they might have with ongoing funding.

States focused spending of their ARPA funding on a variety of activities, with plans ranging from in-depth line items under detailed goals to unallocated funds to be determined at a later date. CMS provided general information on how funding must be spent, including: home health care, personal care services, self-directed personal care services, case management, school-based services, rehabilitative services, private duty nursing, alternative benefit plans, increased access to HCBS, improved provider payment rates, supplies and equipment, workforce support, transition support, mental health services, outreach, and COVID-19 vaccines.¹²

States, with approval from CMS, are currently using their ARPA funds to provide many of these services, expand access, re-think infrastructure supports, and invest in the workforce. Twenty-six states are using at least some funds on cross-sector partnerships, data integration, or other efforts to address social determinants of health.¹³ Twenty-five states are using the funding to add services or increase the benefit levels for existing services and twenty-one states are looking at specific initiatives to support family caregivers.¹⁴

Pre-Pandemic HCBS Policy

States have significant flexibility in how they implement their Medicaid programs, and, as noted, HCBS are mostly optional, not a requirement for receiving federal funds. As a result, states vary significantly in how they provide HCBS, and can provide their own mix of services after submitting a request for a waiver (or waivers) to CMS for approval. As a result, states differ in who they cover, what they cover, how they deliver services, and how they reimburse providers.

According to Medicaid.gov, there are more than 300 waiver programs available across the United States in all states and the District of Columbia. States can offer as many waivers as they would like, as long as CMS approves. Some states offer many, and others limit eligibility and services.

One area where state Medicaid implementation flexibility has the greatest impact is in deciding who is covered. States define Medicaid eligibility based on a combination of needs, income, and assets, and vary greatly on who they include:

Type of need: Today, all states offer HCBS waivers to serve qualifying people with intellectual or developmental disabilities (I/DD), seniors, and adults with physical disabilities.¹⁵ Fewer states serve people with traumatic brain or spinal cord injuries (TBI/SCI), children who are medically fragile, people with mental illness, and those with HIV/AIDS. Services provided by state waivers include home health and personal care services, help keep people in their homes or communities instead of institutions, adult day health, habilitation, respite, day treatment/partial hospitalization, psychosocial rehabilitation, chronic mental health clinic services, and other services.
Income and asset limits: More than 40 percent of states have elected to expand Medicaid to those whose incomes exceed the Supplemental Security Income (SSI) limit but have incomes that are still below the federal poverty level (FPL), much lower than the maximum generally allowed under Medicaid expansion (up to 138 percent¹⁶ of FPL).¹⁷ Over three-quarters of states set HCBS waiver income limits at the federal maximum of 300 percent of the monthly Supplemental Security Income (SSI) limit, and most states include an asset limit as well.¹⁸ For example, California is at 100 percent of SSI, Illinois is 100 percent of FPL, and Georgia is at 300 percent of SSI.¹⁹

A Framework for Analyzing State HCBS Priorities

The ARPA funding specifically supports state efforts to enhance, expand, and strengthen HCBS services. There are some parameters and guidelines for how states can use these funds, but overall there is a lot of state flexibility. That means states can use ARPA funds to meet a number of priority needs that serve beneficiaries and family caregivers, improve conditions for the HCBS workforce, and build longer-term HCBS technological infrastructure.²⁰

This section of the report establishes a framework for looking at three states’ HCBS plans after receiving an infusion of ARPA funds, specifically across the areas of the workforce, technological infrastructure, services, transitions from institutions to homes and community settings, and several other specific areas for improvement. While these areas for investment are listed separately, it’s important to note that investing (or not investing) in each category impacts the others, and each category has some overlap with others. For example, investing in the workforce can expand a state’s capacity to provide more and better services to more people; investing in technological infrastructure can be a key tool for transitioning people into homes and community settings. Specifically, this report looks at how states focused their ARPA-financed HCBS investments on:

Workforce: improving recruitment, retention, and ongoing working conditions by increasing the pay, benefits, and training of direct support professionals;
Technological infrastructure: investing in technology and tools to simplify beneficiary applications, connections between beneficiaries and the workforce, state administration of programs, and data tracking and reporting;
Services: expanding eligibility and increasing access to HCBS for beneficiaries through a range of activities, which may include reducing waiting lists, addressing the needs of children with disabilities, and supporting individuals with behavioral health needs; and
Transitions: improving movement to and stability in the community and independent living by increasing housing access, addressing homelessness, improving coordination of care, and providing home modifications.

How California, Illinois, and Georgia Are Using ARPA Funding for HCBS

This section of the report looks at the usage of additional federal HCBS funding made available through ARPA and increased state funding in three states—California, Illinois, and Georgia—and the lessons learned from those states. These three states take different approaches to HCBS, and thus spend their ARPA funding differently. California’s approved spending plan includes nearly thirty initiatives totaling $3 billion, while Georgia’s approved HCBS plan focuses nearly $600 million into eight initiatives. Illinois selected multiple initiatives for their estimated $349 million from the FMAP increase.²¹ In addition to different funding levels, the context of each state greatly impacted spending decisions. For example, California and Illinois both have union representation of a portion of their home health care and direct services workforces and a history of waiver support. Georgia is nonunion and has a less-developed technological infrastructure. What follows in this report is an analysis of how these three states are spending their ARPA funds (using the elements of the framework described above) that aims to provide guidance for the federal government and states as the work to expand and guarantee HCBS continues.

The Workforce

The home and community-based service workforce comprises the 2.4 million personal care aides and home health aides (and in some cases, nursing assistants) who support individuals in private homes or community settings as well as the direct support professionals who are distinct from these two categories.²² This workforce—as well as residential aides and nursing assistants—added nearly 1.5 million new jobs in the past decade, and this sector is expected to add more new jobs than any other single occupation over the next decade.²³ The fast growth from increased demand combined with the low pay, poor working conditions, and reliance on an immigrant population that has faced restrictions in recent years are leading to a staffing shortage in this sector, which is largely comprised of women and people of color.

The median hourly wage for home health care workers was $13.81 in 2021.²⁴ Higher compensation is the top priority for meeting HCBS staffing needs. Additional training, improved career pathways, and other paths to greater safety, security, and dignity—including unionization—are also important.

Investments in the HCBS workforce also supports beneficiaries. Making these better jobs will help attract, retain and train a talented workforce who can provide high quality care. On the other hand, when there are not enough people to fill these jobs, or when people leave because they are not economically sustainable jobs with dignity, beneficiaries lose out on needed care.

One of the barriers to recruiting and retaining well-trained workers is that the HCBS workforce is hard to unionize, in large part because of the way the National Labor Relations Act excludes domestic workers.

One of the barriers to recruiting and retaining well-trained workers is that the HCBS workforce is hard to unionize, in large part because of the way the National Labor Relations Act excludes domestic workers. As a result, many jobs in the sector do not pay a living wage and lack any sort of career ladder. The National Domestic Workers Alliance, SEIU and others have made progress for the workforce despite these limitations, but public investments are needed to achieve higher wages and provide the benefits that will result in a more robust, stable workforce. Yet public dollars are sorely limited, causing irrational tradeoffs between providing more services for beneficiaries and providing better compensation for home care workers. Furthermore, temporary increases in funding and uncertain future budgets make it harder to establish sustainable wage increases. In addition, achieving higher rates of pay and benefits for workers in one program does not translate to the same for workers in another because states often have different programs for different populations (ie. children with disabilities are served in a different program than seniors). Finally, many poorly paid workers rely on public programs themselves, such as Medicaid and SNAP, to support their health and nutrition.²⁵ The “benefit cliff” effect means that raising rates pay for these workers can sometimes lead to them experiencing a reduction in access to Medicaid and nutrition assistance programs, even when wages are only slightly higher and not enough to make up the difference.

Despite these challenges, unions in both California and Illinois have successfully organized portions of the home care workforce.²⁶ Pre-pandemic work to achieve wage increases helped those unions—especially in Illinois—to leverage the ARPA opportunity to raise rates and therefore wages.²⁷

According to a summary from CMS, the majority of states included workforce development initiatives in their plans, ranging from recruitment and retention bonuses, to pay increases via permanent and temporary rate increases, and student loan forgiveness for direct support professionals.²⁸ Many also included investments in certification and training programs for direct support professionals. Below are outlines of how California, Georgia, and Illinois all invested in their workforces as part of their spending plans.

California’s Workforce Investments

California made investments in the workforce a priority of their increased funding under ARPA. For example, in California’s approved spending plan, the state included stipends, “care economy payments,” loan repayments, bonuses, and training and career pathways in its plans. One of the important pieces was that the state combined training with stipends, rather than creating new training requirements without financially supporting those participating. The workforce investments included in California’s plan are:

Training and stipends. For participants of the In-Home Supportive Services program (IHSS),²⁹ which helps pay for services for eligible beneficiaries, including individuals who are age 65 years or older, disabled, or blind so they can remain safely in their homes, California expanded upon existing training programs, adding opportunities to support the specialized training of IHSS providers to further support beneficiaries with complex care needs. Acknowledging the importance of increasing compensation along with training, the state provided stipends or other one-time incentive payments for training participants. California also made training and stipends available to members of the direct care workforce (non-IHSS) that provide services to Medicaid participants in a range of home and community-based settings, in order to both improve care quality, respond to severe worker shortages in the sector, and prevent unnecessary institutionalization.
Care economy payments. The state also set aside funds for both IHSS and non-IHSS “care economy payments.” These are one-time incentive payments of $500 for providers who worked for a minimum of two months between March 2020 and March 2021 of the pandemic to support retention, recognition, and workforce development.
Loan repayment, bonuses, and training. California also included grants to nonprofits and others who serve a Medi-Cal population. The grants can pay for loan repayment, sign-on bonuses, training, and certification costs to supplement other HCBS workforce recruitment strategies. California also invested in workforce development for specialized populations including homeless individuals and those with traumatic brain injuries.
Georgia’s Workforce Investments

Georgia’s plan used ARPA funds related to its workforce to increase rates, implement specialized payments for HCBS agencies and providers, conduct a rate study for services provided in 1915(c) waivers, and engage in workforce development and training. Their plan included fewer details than those of Illinois and California.

Rate increases. In order to retain a stable workforce and recruit direct support professionals and home health care workers during the public health emergency, Georgia provided increased reimbursement rates and specialized payments such as hazard pay, shift differential pay, and one-time signing bonuses and/or retention bonuses for specific programs: Independent Care Waiver Program 1915(c) HCBS services Elderly and Disabled Waiver Program 1915(c); HCBS services Crisis Stabilization Units (Temporary Payment Enhancements); Crisis Service Centers/Temporary Observation Core services (Temporary Payment Enhancements); Community Service Boards (Temporary Payment Enhancements); Behavioral Health agencies providing services under the Medicaid rehab option (Temporary Payment Enhancements) IDD workforce 1915(c); and HCBS services (Temporary Payment Enhancements).
Rate study. Georgia also committed to performing a rate study of waivers to enhance the overall quality of HCBS 1915(c) waiver services and include market research and a national scan.
Workforce development and training. Georgia invested in additional HCBS training and workforce development programs to expand provider capacity and improve the quality of care and service delivery. The state is aiming to use this to recruit and retain their direct care workforce.

Illinois’s Workforce Investments

Illinois’s investments in the HCBS workforce with ARPA funds included a combination of wage increases through rate increases, one-time payments to address workforce stabilization and retention, and support for training. Because Illinois has separate programs for aging populations and populations with disabilities, the initiatives were separated by population and program.

Permanent rate increases. Illinois was in a good position to raise rates, having already had in place a 2020 rate study based on network and fair market rates for care coordination in the Illinois Department on Aging. Many of these rates had not had an increase in over twenty years. The state had begun to raise these rates, but did not have the funds to finish, and the ARPA funds helped to support implementing the remaining recommended increases to address workforce stabilization. The state committed to including funding for these rate increases on an ongoing basis as well. Similarly, the state accelerated rate increases for in-home service and adult day service for aging populations and approved a rate increase for direct support professionals to help keep pace with the statewide and city minimum wages. Illinois also implemented a rate increase for occupational therapy and medication administration to better support transitions from nursing facilities and specialized mental health rehabilitation facilities to the community.
New funding for behavioral health. Funding was set aside for providers enrolled as community mental health centers, behavioral health clinics, or as providers of substance use disorder services to address staffing stabilization, retention, recruitment, and related purposes important to ensuring access to critically needed behavioral health services for the state’s Medicaid beneficiaries. This increased “workforce challenge” spending, when coupled with other rate increases and stability payments expended over the pandemic, will provide a significant infusion of revenue and allow providers to create improvements in access in addition to stabilizing the workforce.
Temporary increases. Some programs instituted temporary increases to provide short-term raises in light of the short-term funding increase and immediate needs. For example, Illinois extended their COVID-19 rate increases for community-integrated living arrangements (CILAs) and community day services (CDS), including a 5 percent per diem increase for CILAs and a 15 percent hourly increase for CDS. The state also raised the in-home respite rates and the supportive living program per diem rates temporarily to ensure higher compensation in the form of salary, wages, bonuses, or hiring incentives to help with staff recruitment and retention.
One time payments/bonuses. The state also included “workforce retention payments”—one-time payments to address workforce stabilization and retention of care coordinators. Payments were dedicated directly to hiring staff and improving the ratio of care coordinators to participants. Similarly, the state included pandemic bonus pay for individual providers and homemakers, including approximately $500 to $1,000 for each provider, with details determined via collective bargaining.
Family caregivers. Illinois expanded beneficiary direction available in medically fragile/technology dependent (MFTD) waiver and the nursing and personal care services (NPCS) population and allowed unlicensed parents to be able to become paid caregivers. The payment to caregivers could be part of the individual’s current resource allocation. The additional FMAP would be used to support the exploration, development, and implementation of the infrastructure to support the beneficiary-directed care expansion, including quality monitoring, safety assurances, training, and more. As of the fall of 2021, the state agency had begun building the infrastructure for self-direction by requesting technical assistance from CMS.
Training. The state invested in improved training for nurses working in the home with medically fragile participants as well as nursing agencies for those providing self-directed care. This initiative is temporary through March 2024. The state also increased the nurse training waiver service rates for salary and wage increases, bonuses, or other formats to help incentive training for medically fragile waiver participants.

Technological Infrastructure

In addition to the human infrastructure needed—investments in the workforce as well as family caregivers—the HCBS system needs technological infrastructure for states to manage beneficiaries and the workforce and their connections to each other. Technological infrastructure is often an easier one-time investment because even if it requires maintenance or repair, the most significant cost is the up-front cost. All three states invested in infrastructure, such as through technology upgrades and new systems.

California Technological Infrastructure Investments

California’s infrastructure investments are focused on better serving existing clients and expanding to more clients through data transparency, information technology modernization, and other initiatives.

LTSS data transparency funding. In order to ensure that key stakeholders have access to the information they need while expanding, enhancing, and improving the quality of LTSS in all home, community, and congregate settings, California is investing in an initiative to improve data transparency. This will be accomplished by creating an LTSS data dashboard linked with statewide nursing home and HCBS utilization, quality, demographic, and cost data. In particular, this will support the state in examining and ultimately improving access and reducing disparities in who utilizes HCBS services.
Modernize developmental services information technology. California plans to upgrade their financial system and their beneficiary electronic records management system. These measures will improve efficiencies and provide more detailed expenditure data consistent with CMS payment system expectations. California will also provide better standardization of data to review measures/outcomes, demographics, service needs, special incident reports, and so on. In addition, it will simplify the process for beneficiaries to access their own records via the web or app.
Access to technology for seniors and persons with disabilities funding. California proposes to pay for devices, training, and ongoing Internet connectivity costs for low-income older and disabled adults for two years, as part of the activity to provide access to technology for seniors and persons with disabilities. The state will provide grants directly to county human services agencies that opt to participate in the pilot program to increase access to technology for older adults and adults with disability in order to help reduce isolation, increase connections, and enhance self-confidence.
Senior nutrition infrastructure funding. The state has dedicated $40 million to fund capacity and infrastructure improvement grants for senior nutrition programs to prioritize purchasing, upgrading, or refurbishing infrastructure for the production and distribution of congregate or home-delivered meals.

Georgia Technological Infrastructure Investments

Georgia is focused on using some of its increased HCBS funds to enhance data and reporting.

Electronic case management platform. Georgia invested in an electronic case management technology platform for Medicaid HCBS, incorporating electronic health record information. The state included not only the platform but also staff training on how to use it and be able to be used to provide insight into trends and areas to target quality improvement activities.
Tracking performance. Georgia also enhanced their incident management process by developing standardized reporting templates and dashboards to further support the efforts to identify trends and track performance. The state is looking into updating the whole system.

Illinois Technological Infrastructure Investments

Illinois is aiming to improve technology and tools to better serve beneficiaries and make stronger connections between beneficiaries and staff.

Application process. Illinois proposed to improve their application process to maximize access to information and resources through a technology platform, provider outreach, and user support to both beneficiaries and providers. In addition, the state plans to replace their outdated determination of need instrument with a community health assessment (CHA) tool that will more accurately assess clinical and behavioral needs. These funds will support training state and contracted agency staff, technology enhancement, building system interfaces, and creating the necessary infrastructure to support the implementation of the new assessment tool.
Nurse staffing coordination. Illinois has also proposed a nurse vacancy portal to better communicate about needs and availability of nurses. The portal will allow nursing agencies to communicate about open shifts in need of coverage and nurse availability for families and care coordinators. The website also would allow medically fragile, technology-dependent families to post shifts that they need filled, allowing nursing agencies to see needs individually, by county, and statewide.

Services

At the core of the ARPA funding was the goal to enhance, expand, and strengthen services provided to beneficiaries. CMS provided an extensive listing of activities states could engage in as they claimed their ARPA funding increase. These services ranged from home health and personal care, to expanding ongoing pilot or innovative activities to provide services, to providing additional services under new waivers to different populations of individuals in need. Across the country, states are engaging in a variety of activities as of the writing of this report. On average, states are spending an additional $2,606 per beneficiary for HCBS.³⁰ The most common state initiative across all spending plans is expanding beneficiary services. Forty-eight states planned to spend $10.3 billion to support approximately 7.7 million beneficiaries.³¹ The three states are using their funds to expand services in many ways.

California’s Improvements to Services

California’s approved spending plan includes a strong focus on increased services. California is one of six states proposing significant increases of additional HCBS slots to reduce waiting lists, with an additional 7,000 slots proposed.

Helping beneficiaries navigate services. California is proposing robust initiatives, including those focused on service navigation, improvement, and expansion. Such initiatives include participating in CMS’s No Wrong Door (NWD) System collaborative effort, with a $5 million one-time investment to support the interoperability between various California support systems so that no matter what “door” (agency or service provider) they enter the system through, they can easily find access to the full range of HCBS that the state provides. Another critical navigation investment is a $40 million one-time funding increase to the CalBridge Behavioral Health Pilot Program. The program is active, but the funding supports new activities such as expanding the role of the navigator, improving services, allowing new grantees, and supporting technical assistance and training for participating emergency departments.
Focusing services on beneficiary needs. Improvements to services include broadly enhancing California’s HCBS capacity and models of care. Such investments include a $650 million enhancement in federal funding to improve and stabilize services focused on the beneficiary. This investment will support building infrastructure to help beneficiaries and their families better utilize person-centered practices and supports and the entire model of care begin to shift to an outcome-based system as compared to compliance based. Service investments also include $25 million to support coordinated family support services. This funding will pilot a service similar to supported living for adults living with their families, to improve coordinated care to a level similar to those living outside the home. An additional $12.5 million is focused on enhanced community integration for children and adolescents with intellectual and developmental disabilities. A grant program from this funding will support regional centers to coordinate with park and recreation departments to develop integrated recreational activities for youth with disabilities. Another novel service improvement is a $106 million enhancement to state funding for Older Adults’ Recovery and Resilience. California plans to focus this funding to pay for devices, training, and Internet connectivity for older, disabled, low-income adults for two years to improve community access, social engagement, information access, and service delivery. While there are many other exciting service improvements and expansions California has proposed and is currently implementing, these offer a glimpse into the funding implementation and actions.

Georgia’s Improvements to Services

Georgia developed eight initiatives from their HCBS funding through consideration of stakeholder input, and directed a considerable portion to address current services gaps and needs.

Serving children with Autism. Georgia anticipates spending just over $54 million to expand HCBS to include behavioral health aides for children diagnosed with Autism. The goal of this spending is to develop a new service for youth under the age of 21 diagnosed with Autism to receive support from a behavioral aide through the 1915(c) waiver. The goal is to provide services in homes and communities and reduce admittance into psychiatric residential treatment facilities.
Telehealth. A second initiative invests approximately $206 million to expand the use of technology to deliver services via telehealth. Georgia will use the funding to better incorporate telehealth visits through expanding use of assistive technology and devices.

Illinois’s Improvements to Services

Illinois’s approved spending plan allocated funding for a variety of service improvements under their HCBS waivers. As noted previously, as of the writing of this report and review of Illinois’s spending plan, not all of the funding had been allocated. The below are several critical programs to improve services.

Behavioral health services. One Illinois initiative expands access to HCBS, in particular for individuals with intensive behavioral health needs under 1915(i). This initiative improves service delivery in addition to supporting program staff activities.³²
Independent and community living. Another Illinois initiative to expand service delivery is a $5 million investment for one-time funding for assistive technology, home modifications, and vehicle modifications beyond what is currently provided in the waivers. This initiative will expand access to living independently and in the community. Several investments specifically to address aging were included in the spending plan. One included providing assistive technology devices as a new HCBS waiver service, with $30 million in funding. This additional service builds on a successful Illinois specific program called IL Care Connections, which provides devices to older adults experiencing social isolation as a result of the pandemic. Another aging specific service enhancement (with $7.5 million in funding) is a new waiver service that allows for environmental modifications to improve and ensure the health, safety, and welfare of beneficiaries. The modifications may include household, weatherization, or exterior items such as ramps. From youth to older adults, Illinois focused much of their funding on expansion of services to improve access to living in homes and in the community.

Transitions

States included specific investments that focused on the movement to and stability in the community for disabled individuals and older adults from congregate care settings and other settings that limited access to living independently. The transition supports that states provided through ARPA funding included increasing housing access, addressing homelessness, improving coordination of care, and focusing funding on modifications to homes for more independence. These transition supports represent a specific focus on social determinants of health (SDOH), or elements of the environment that impact health, daily functioning, and quality of life. SDOH can include economic stability, education, health care access, community living, and community context.³³ Twenty-four states plan to spend $1.1 billion³⁴ on HCBS improvements that address SDOH that may include providing housing and community transition supports and improving employment opportunities. Twelve states, including Georgia and Illinois, plan to spend a total of $266 million focused on improved employment opportunities for disabled people and older adults.

This section of the report presents selected investments made by the three states in support of their spending focus on transition and social determinants of health.

Inclusion of Transition in California’s Plan

California included four initiatives focused on HCBS transitions and community living.

Community-based residential continuum pilots. The first initiative is a $110 million investment in community-based residential continuum pilots for vulnerable, aging, and disabled populations. The pilots provide medical and supportive services in homes and independent living settings for individuals with mental health disabilities, homeless individuals, older adults, and disabled people. The funding supports managed care plans and coordination of care with medical and behavioral health providers.
Eliminating the assisted living waitlist. The second initiative focused on transition is a $85 million investment in eliminating the assisted living waitlist by adding 7,000 slots to the assisted living waiver. The funding is assisting Medi-Cal beneficiaries living and staying in their communities rather than living in facilities.
Reducing homelessness. The third initiative focuses on reducing homelessness, with $650 million invested in supporting individuals who are homeless or at risk of homelessness. Counties will build off current funding to address unmet needs and focus on keeping individuals housed.
Community care expansions. The final transition initiative invests $348 million into community care expansion for counties and tribes for adult senior care residential facilities, residential care facilities for the elderly, and residential care facilities for the chronically ill.

Inclusion of Transition in Georgia’s Plan

As mentioned above, Georgia is one of twelve states focusing on improving employment opportunities in their spending plan. While limited in detail, Georgia is planning to spend $4 million to provide supported employment services for individuals with disabilities making the transition from school to competitive integrated employment. This is a novel approach to the funding and supports transition to community integration.

Inclusion of Transition in Illinois’s Plan

As mentioned above, Illinois is one of twelve states that included employment as a key funding item in their spending plan. Illinois is spending $5 million on the creation of an Employment First program to move providers of segregated employment to competitive integrated employment through a transformation process. In addition to employment, Illinois has two additional initiatives focused on transition.

Improving service delivery in the home. The first aims to provide assistive technology and home modifications to improve service delivery. With $1.1 million dedicated toward this initiative, the goal is to expand beneficiaries’ access to services and providers in their communities, simplify the approval process, and build capacity for assistive technology and home modifications.
Improving outreach for transition. The second initiative provides $8 million to improve outreach to individuals in institutional settings and support a smooth transition to their homes and community settings. This includes developing transition planning and accessing community services and supports.

Recommendations

California, Georgia, and Illinois offered a glimpse at the similarities and vast differences across states in their spending choices with the ARPA funding. The three states made spending decisions based on local contexts, needs of their communities, and, in some cases, investments in policy decisions for the future. One clear takeaway resonated: long-term, sustainable funding is needed to continue making significant improvements to HCBS. To truly invest in the workforce, improve technological infrastructure, increase access to services, and drive transition to the community, funding that extends more than a couple years is needed to continue the innovation states have started from the down payment of the ARPA. The following are recommendations to continue these improvements and build on the progress seen across the three states analyzed.

One clear takeaway resonated: long-term, sustainable funding is needed to continue making significant improvements to HCBS.

Address HCBS in a Future Reconciliation Package

The Build Back Better Act that began to move through Congress in 2021 and early 2022, targeted for the reconciliation process, included $150 billion for HCBS. This historic funding would have built on the down payment of the ARPA funding, allowing states to expand access to services for disabled individuals and older adults, improve wages for home care workers, and strengthen the workforce. Although Build Back Better faltered, if a new reconciliation bill were to move through Congress in 2023, HCBS investments must be included. The impact of these investments is not only improvement of services but an economic angle—funding in HCBS improves the economy by allowing individuals receiving the services to remain in homes and participate in their communities and increasing wages of workers to increase assets and savings.³⁵ Including HCBS in a future reconciliation package, or other budget package, is essential for the long-term success of the care economy, support for community living, and economic stability of those receiving and providing services.

Support the Better Care, Better Jobs Act

The Better Care, Better Jobs Act (S. 2210/HR 4141) would provide a historic investment in Medicaid HCBS that will serve millions more beneficiaries; expand supports for family caregivers; and address payment rates to improve working conditions, recruitment, and retention of direct care workers. It will help people navigate enrollment and eligibility, improve transitions to home and community, and include training opportunities for both the workforce and family caregivers.³⁶ It is estimated that the bill would expand HCBS for more than 3.2 million Americans, help more than 1.1 million family caregivers return to work and create more than half a million new home care jobs.³⁷

Build a More Robust Care Infrastructure

Families need HCBS services as well as a broad array of other policies, including paid family and medical leave, paid sick and safe days, and high quality, affordable child care and early education. Such policies must prioritize care for beneficiaries, their families, and the paid workforce, with a focus on those who have faced historic and intersecting oppressions. A fully financed care infrastructure—from child care and early education to care for aging adults and disabled people (including HCBS)—is not only critical to a racially just and equitable economic recovery, but is also key to building a pathway forward that is sustainable for all families.³⁸

Opportunities for Future Success and Collaboration

Medicaid is inherently a state-centric policy with decisions driven by the contextual and political needs of each state. The large, one-time infusion of funding from the ARPA provided a unique opportunity for states to learn from one another to develop long-term plans for improvement. Initial reviews of states, such as this report, demonstrate that states that have focused on demonstrations and pilots for additional services, expanding waivers to additional populations, and focused on innovation as more funds become available were able to pivot and quickly build plans with the ARPA investment. Lessons learned from services provided, improvements to the workforce, transition pilots, and technology expansion can provide opportunities for states to develop agendas to improve HCBS for disabled people and older adults and maximize funding opportunities when they present themselves. Additional evaluation of all state plans is needed including evaluating successes, barriers and challenges, and areas needed for additional research.

Acknowledgements

The authors would like to thank Nicole Jorwic and the team at Caring Across Generations, Dan Berland, Teja Stokes, Amanda Ream, Greg Will, Carrie Chapman and MaryBeth Musumeci for their insights and feedback.

Notes

This report uses person first and identity first language throughout. The intentionality behind this choice is to honor the preferences, cultures, and identities within the disability community.
Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula, “State Policy Choices About Medicaid Home and Community-Based Services Amid the Pandemic,” KFF, March 4, 2022, https://www.kff.org/medicaid/issue-brief/state-policy-choices-about-medicaid-home-and-community-based-services-amid-the-pandemic/.
Ariela Migdal, “The Legacies of Slavery and Jim Crow Live on With Exclusion of Home Health Care Workers from Fair Labor Laws,” ACLU, March 6, 2015, https://www.aclu.org/blog/speakeasy/legacies-slavery-and-jim-crow-live-exclusion-home-health-care-workers-fair-labor-laws.
From 2016 to 2060, the population of adults aged 65 and over will almost double, from 49.2 million to 94.7 million, and the number of adults over 85 will nearly triple over the same time period, from 6.4 million to 19 million. “Key Facts and FAQs: Understanding the Direct Care Workforce,” PHI National, accessed July 6, 2022, http://www.phinational.org/policy-research/key-facts-faq/.
Chris Lee, “Combined Federal and State Spending on Medicaid Home and Community-Based Services (HCBS) Totaled $116 billion in FY 2020, Serving Millions of Elderly Adults and People with Disabilities,” KFF, March 4, 2022, https://www.kff.org/medicaid/press-release/combined-federal-and-state-spending-on-medicaid-home-and-community-based-services-hcbs-totaled-116-billion-in-fy-2020-serving-millions-of-elderly-adults-and-people-with-disabilities/#.
“The Impact of COVID-19 on People with Disabilities,” National Council on Disability, October 29, 2021, https://ncd.gov/sites/default/files/NCD_COVID-19_Progress_Report_508.pdf.
Suzy Khimm, “Biden’s pledge to boost home caregiver funding excluded from infrastructure deal,” NBC News, June 26, 2021, https://www.nbcnews.com/news/us-news/biden-s-pledge-boost-home-caregiver-funding-excluded-infrastructure-deal-n1272435.
Ibid.
Molly O’Malley Watts, MaryBeth Musumeci, and Meghana Ammula, “State Policy Choices About Medicaid Home and Community-Based Services Amid the Pandemic,” KFF, March 4, 2022, https://www.kff.org/medicaid/issue-brief/state-policy-choices-about-medicaid-home-and-community-based-services-amid-the-pandemic/.
States that accepted these funds were prohibited from making Medicaid eligibility more restrictive or disenrolling beneficiaries through the end of the COVID-19 Public Health Emergency, ensuring these funds were used to benefit all existing enrollees; MaryBeth Musumeci, “Key Questions About the New Increase in Federal Medicaid Matching Funds for COVID-19,” KFF, May 4, 2020, https://www.kff.org/coronavirus-covid-19/issue-brief/key-questions-about-the-new-increase-in-federal-medicaid-matching-funds-for-covid-19/.
MaryBeth Musumeci, Molly O’Malley Watts, and Priya Chidambaram, “Key State Policy Choices About Medicaid Home and Community-Based Services,” KFF, February 4, 2020, https://www.kff.org/medicaid/issue-brief/key-state-policy-choices-about-medicaid-home-and-community-based-services/.
“Letter to State Medicaid Directors: SMD# 21-003 RE: Implementation of American Rescue Plan Act of 2021 Section 9817: Additional Support for Medicaid Home and Community-Based Services during the COVID-19 Emergency,” U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, May 13, 2021, https://www.medicaid.gov/federal-policy-guidance/downloads/smd21003.pdf.
Jennifer Sullivan, “States are Using One-Time Funds to Improve Medicaid Home- and Community-Based Services, But Longer-Term Investments Are Needed,” Center on Budget and Policy Priorities, September 23, 2021, https://www.cbpp.org/research/health/states-are-using-one-time-funds-to-improve-medicaid-home-and-community-based.
Ibid.
MaryBeth Musumeci, Molly O’Malley Watts, and Priya Chidambaram, “Key State Policy Choices About Medicaid Home and Community-Based Services,” KFF, February 4, 2020, https://www.kff.org/medicaid/issue-brief/key-state-policy-choices-about-medicaid-home-and-community-based-services/.
Tricia Brooks , Lauren Roygardner , and Samantha Artiga, “Medicaid and CHIP Eligibility, Enrollment, and Cost Sharing Policies as of January 2019: Findings from a 50-State Survey,” KFF, March 27, 2019, https://www.kff.org/medicaid/report/medicaid-and-chip-eligibility-enrollment-and-cost-sharing-policies-as-of-january-2019-findings-from-a-50-state-survey.
MaryBeth Musumeci , Priya Chidambaram , and Molly O’Malley Watts, “Medicaid Financial Eligibility for Seniors and People with Disabilities: Findings from a 50-State Survey,” KFF, June 14, 2019, https://www.kff.org/report-section/medicaid-financial-eligibility-for-seniors-and-people-with-disabilities-findings-from-a-50-state-survey-issue-brief/.
MaryBeth Musumeci , Molly O’Malley Watts , and Priya Chidambaram, “Key State Policy Choices About Medicaid Home and Community-Based Services,” KFF, February 4, 2022,
https://www.kff.org/report-section/key-state-policy-choices-about-medicaid-home-and-community-based-services-issue-brief/#:~:text=Overpercent20threepercent2Dquarterspercent20ofpercent20HCBS,forpercent20anpercent20individualpercent20inpercent202019).
MaryBeth Musumeci , Molly O’Malley Watts , and Priya Chidambaram, “Key State Policy Choices About Medicaid Home and Community-Based Services: Appendix Tables,” KFF, February 4, 2022,
https://www.kff.org/report-section/key-state-policy-choices-about-medicaid-home-and-community-based-services-appendix-tables/.
Centers for Medicare & Medicaid Services, “Strengthening and Investing in Home and Community Based Services for Medicaid Beneficiaries: American Rescue Plan Act of 2021 Section 9817 Spending Plans and Narratives Medicaid,” U.S. Department of Health and Human Services, https://www.medicaid.gov/medicaid/home-community-based-services/guidance/strengthening-and-investing-home-and-community-based-services-for-medicaid-beneficiaries-american-rescue-plan-act-of-2021-section-9817-spending-plans-and-narratives/index.html.
Unless otherwise noted, the analysis in this section relies on information contained in the spending plans submitted by the three states. For more information, see Jacey Cooper, State Medicaid Director, State of California—Health and Human Services Agency, “Implementation of the American Rescue Plan Act (ARPA) of 2021: Section 9817: Additional Support for Medicaid Home and Community-Based Services (HCBS) during the COVID-19 Emergency,” letter to the Center for Medicare and Medicaid Services, September 17, 2021, https://www.medicaid.gov/media/file/ca-hcbs-spending-plan0.pdf;, Lynnette R. Rhodes Executive Director, Medical Assistance Plans, State of Georgia—Department of Community Health, “Spending Narrative” letter to the Center for Medicare and Medicaid Services, July 12, 2021, https://www.medicaid.gov/media/file/ga-arpa-initial-spending-plan.pdf; and “Illinois Initial Spending Plan and Narrative for Enhanced Funding under the American Rescue Plan Act of 2021 to Enhance, Expand, and Strengthen Home and Community-Based Services under the Medicaid Program,” Illinois Department of Healthcare and Family Services, July 12, 2021, https://www2.illinois.gov/hfs/SiteCollectionDocuments/11012021IllinoisARPHCBSEnhancedFMAPSpendingPlan.pdf#:~:text=Thepercent20FY2022percent20Budgetpercent20Implementationpercent20Actpercent20percent28Publicpercent20Actpercent20102-0016percent29percent2C,expandpercent2Cpercent20orpercent20strengthenpercent20HCBSpercent20underpercent20305percent20ILCSpercent205percent2F5-2.09.
“Direct Care Workers In The United States Key Facts,” PHI, September 7, 2021, https://www.phinational.org/resource/direct-care-workers-in-the-united-states-key-facts-2/.
Ibid.
Asha Banerjee, Elise Gould, and Marokey Sawo, “ Setting higher wages for child care and home health care workers is long overdue,” Economic Policy Institute, November 18, 2021, https://www.epi.org/publication/higher-wages-for-child-care-and-home-health-care-workers/.
Robert Espinoza, “The Economic Case for Improving Direct Care Jobs,” PHI, August 13, 2021, https://www.phinational.org/the-economic-case-for-improving-direct-care-jobs/.
Eric D. Lawrence, “Unionization could help home health care workers with wages, experts say,” Detroit Free Press, October 19, 2021, https://www.freep.com/story/news/local/michigan/2021/10/19/biden-caregivers-unions/5868553001/.
Dan Petrella, “Illinois home care, child care workers to get overdue raise,” Chicago Tribune, March 19, 2019, https://www.sj-r.com/story/news/state/2019/03/19/illinois-home-care-child-care/5673064007/.
Centers for Medicare & Medicaid Services, “American Rescue Plan Act of 2021(ARP) Section 9817: Overview of State Spending Plans,” U.S. Department of Health and Human Services, Source of data as of November 30, 2021, https://www.medicaid.gov/medicaid/home-community-based-services/downloads/arp-sec9817-overview-infographic.pdf.
IHSS services include house cleaning, meal preparation, laundry, grocery shopping, personal care services (such as bowel and bladder care, bathing, grooming and paramedical services), accompaniment to medical appointments, and protective supervision for the mentally impaired. It is important to note that IHSS is the only program that is unionized in California.
Centers for Medicare & Medicaid Services, “American Rescue Plan Act of 2021(ARP) Section 9817: Overview of State Spending Plans,” U.S. Department of Health and Human Services, Source of data as of November 30, 2021, https://www.medicaid.gov/medicaid/home-community-based-services/downloads/arp-sec9817-overview-infographic.pdf.
Ibid.
Centers for Medicare & Medicaid Services, “American Rescue Plan Act of 2021(ARP) Section 9817: Overview of State Spending Plans,” U.S. Department of Health and Human Services, Source of data as of November 30, 2021, https://www.medicaid.gov/medicaid/home-community-based-services/downloads/arp-sec9817-overview-infographic.pdf.
Office of Disease Prevention and Health Promotion, “Healthy People 2030: Social Determinants of Health,” U.S. Department of Health and Human Services, https://health.gov/healthypeople/priority-areas/social-determinants-health.
Centers for Medicare & Medicaid Services, “American Rescue Plan Act of 2021(ARP) Section 9817: Overview of State Spending Plans,” U.S. Department of Health and Human Services, Source of data as of November 30, 2021, https://www.medicaid.gov/medicaid/home-community-based-services/downloads/arp-sec9817-overview-infographic.pdf.
Congressional Budget Office, “Economic Effects of Expanding Home-and Community-Based Services in Medicaid,” November 2021, https://www.cbo.gov/system/files?file=2021-11/57632-Medicaid.pdf.
“Better Care Better Jobs Act S. 2210/ H.R. 4131,” National Association for Home Care & Hospice,
https://www.nahc.org/advocacy-policy/legislative-priorities/better-care-better-jobs-act/.
U.S. Senate Special Committee on Aging, “Support Grows for the Better Care Better Jobs Act,” August 3, 2021, https://www.aging.senate.gov/press-releases/support-grows-for-the-better-care-better-jobs-act.
“Building Our Care Infrastructure: For Equity, Economic Recovery and Beyond,” Caring Across Generations, September 1, 2020, https://caringacross.org/carepaper/.

Tags: disability, covid-19, HCBS, home and care community based services

How Three States Made COVID-Relief Investments in Improving Home- and Community-Based Services

Background: HCBS Policy in Response to the Pandemic

Timeline for ARPA Funding of HCBS

Pre-Pandemic HCBS Policy

A Framework for Analyzing State HCBS Priorities