See Me, Hear Me: Next Generation Person-Centered Care
/in Behavioral/Mental Health and SUD, Policy Blogs, Featured News Home Long-Term Care, Palliative Care /by Ella Taggart and Wendy Fox-GrageStates Use Appendix K and Emergency Waivers to Support Home- and Community-Based Services in Response to COVID-19
/in COVID-19 State Action Center Charts, Featured News Home, Maps Care Coordination, Children/Youth with Special Health Care Needs, Chronic and Complex Populations, Chronic Disease Prevention and Management, COVID-19, Health Equity, Long-Term Care, Medicaid Managed Care, Physical and Behavioral Health Integration, Population Health, Social Determinants of Health /by Salom TeshaleThe Future of Aging Policy: A Snapshot of State Priorities
/in Chronic and Complex Populations, Policy Blogs, Featured News Home Long-Term Care, Social Determinants of Health /by Kimberly Hodges, Wendy Fox-Grage and Hemi TewarsonWebinar: Strategies to Increase Access to PACE: Findings from the NASHP State PACE Action Network
/in Policy Maryland, Massachusetts Webinars Chronic and Complex Populations, Long-Term Care /by NASHP StaffState Community Health Worker Models
/in Community Health Workers Featured News Home, Maps Behavioral/Mental Health and SUD, Care Coordination, Chronic and Complex Populations, Chronic Disease Prevention and Management, Community Health Workers, Cost, Payment, and Delivery Reform, Health System Costs, Long-Term Care, Medicaid Managed Care, Physical and Behavioral Health Integration, Population Health, Primary Care/Patient-Centered/Health Home Community Health Workers /by NASHP StaffState Opportunities to Strengthen Home and Community-Based Services through the American Rescue Plan
/in COVID-19 Relief and Recovery Resource Center Blogs, Featured News Home Long-Term Care, Relief and Recovery /by Kitty Purington and Danielle OwensThe American Rescue Plan of 2021 (ARP) – signed into law on March 11, 2021 – provides states with a one-year, 10 percentage-point increase to the federal medical assistance percentage (FMAP) for Medicaid expenditures on home and community-based services (HCBS) for children and adults. This increase provides states with a critical opportunity to address both emerging and long-standing challenges in state long term care systems – systems that have been heavily impacted by the COVID-19 pandemic in the last 14 months. The Center for Medicare & Medicaid Services (CMS) issued a letter to State Medicaid Directors on May 13, providing additional guidance to states on how they can use this new funding.
Highlights from CMS guidance:
- The increased FMAP must be used to supplement, not replace, existing state funds spent on Medicaid HCBS in effect as of April 1, 2021.
- State funds equivalent to the amount of the increased FMAP can be used to facilitate activities that enhance, expand, or strengthen Medicaid HCBS.
- States are prohibited from imposing stricter eligibility requirements for HCBS programs and services than were in place on April 1, 2021, and may not eliminate covered services or reduce the amount, duration, or scope of those services during this period.
- CMS will not apply penalties or non-compliance restrictions to states once the authority for temporary changes to HCBS eligibility, coverage and/or payment rates (e.g., Appendix K waivers and disaster relief state plan amendments) has expired or if the state needs to implement changes to comply with federal requirements
- CMS will work with states making programmatic changes to revise cost effectiveness projections appropriately and determine the feasibility of their budget neutrality models.
While the enhanced FMAP increases federal funding for specific services, the impact of the 10% bump could have broader implications for state HCBS systems. States may use state dollars freed up by the enhanced match to “enhance, expand, or strengthen” Medicaid HCBS in myriad ways. State context and specific priorities will drive these investments, which could include:
- Bolstering workforce: COVID-19 has highlighted the need to better support the long-term care workforce. States can target resources to increase wages and benefits, facilitate vaccinations and other COVID protections, and invest in training and career pathway strategies to grow and sustain a diverse LTC workforce, including peers and community health workers.
- Addressing equity: Expanding access to HCBS services in underserved communities and communities of color is a critical priority across states: policy makers may choose to enhance cultural and linguistic capacity, assess and address equity through existing No Wrong Door Systems, and invest in community-based organizations that are located in and serve communities especially hard hit by the COVID pandemic.
- Supporting family caregivers: Families can be critical to keeping adults and children and youth with special health care needs (CYSHCN) at home or in community settings. States may want to increase services and supports for families, including respite; establish or strengthen family caregiver assessment and outreach; build greater cultural and linguistic capacity; enhance Medicaid self-direction programs that pay families and others to provide Medicaid services, and facilitate wider use of innovative technology.
- Investing in behavioral health recovery: The higher match rate is also available for services to support people in recovery from mental illness and substance use disorders. Enhancements could include strengthening community-based interventions that help people remain in housing or stay employed; building cross-system reentry capacity with state prisons or local jails; developing diverse peer support capacity for people with behavioral health disorders; improving transitions for youth with behavioral health needs, and promoting access to recovery options for children, youth, and adults in underserved areas.
Additional considerations for states
States will have to quickly identify priorities and focus areas, identify services available for the enhanced FMAP, and submit plans and budgets within a very narrow timetable. Other issues to consider:
Sustainability: The enhanced FMAP is only available for one year; additional state funds that result from the enhanced match are available to support HCBS activities through March 31, 2024. States that opt to expand access to HCBS will want to plan for sustainability of services, both after the initial one-year FMAP bump, and through 2024 when all additional resources need to be spent.
Waiver/SPA rules still apply: States may add new services to maximize impact of the FMAP bump, but may need to submit a waiver or state plan amendment to do so. CMS will work with states to ensure state compliance with cost neutrality and budgeting rules.
State planning and initiatives: States may already have legislative and other state policy initiatives in the works that impact their HCBS systems. These ongoing or upcoming initiatives may benefit from ARP funding and can be incorporated into state submissions.
The American Rescue Plan funding represents an important opportunity for state policy makers to address long-standing challenges in HCBS systems related to access, rebalancing, health equity, workforce, and other issues. Initial state plans are due to CMS within 30 days of May 13th. CMS indicates it will publicly post state plans; NASHP will track these plans as they are posted and share information on emerging themes.
Paying Family Caregivers through Medicaid Consumer-Directed Programs: State Opportunities and Innovations
/in The RAISE Act Family Caregiver Resource and Dissemination Center Connecticut, Florida, Virginia Featured News Home, Reports Chronic and Complex Populations, Chronic Disease Prevention and Management, Consumer Affordability, Cost, Payment, and Delivery Reform, Health Coverage and Access, Health System Costs, Long-Term Care, Medicaid Managed Care, Population Health, State Resources, The RAISE Family Caregiver Resource and Dissemination Center, Workforce Capacity /by Salom Teshale, Wendy Fox-Grage and Kitty PuringtonFamily members provide significant amounts of care to relatives with complex needs, including those who are Medicaid enrollees.
Individuals may hesitate about receiving care in congregate care settings, particularly during the COVID-19 pandemic, but many face home-based care service workforce shortages. Programs that incorporate family members who provide care can help support person-centered care for Medicaid enrollees and also help states address the demand for long-term services and supports. States have the opportunity to use Medicaid to support enrollees with long-term care needs and their families by developing consumer direction programs that allow family members to be hired to provide care. This report explores how Connecticut, Florida, and Virginia developed consumer-directed care programs to serve older adults and people with physical disabilities.
Introduction
COVID-19 has upended states’ long-term services and supports (LTSS) systems and strained congregate care facilities. A recent report suggests virtually all states have seen a significant drop in skilled nursing facility occupancy rates . The increasing demand for home-based care is exacerbating underlying challenges, such as long-standing LTSS direct care workforce shortages and gaps in meeting the needs of communities of color and speakers of different languages.
Medicaid consumer–directed care programs are an alternative way individuals can receive home-based services. Consumers choose and hire their care providers rather than having an agency dictate who delivers care.
To address these challenges, states are exploring how Medicaid options can support enrollees with long-term care needs through consumer direction programs (also called consumer-directed care programs, participant direction programs, or self-direction programs) that allow family members to be paid for providing care. States have developed and expanded consumer direction programs over the past decades. Given increasing interest in home-and community-based care over institutional care, consumer direction programs are a growing option to offer older adults and people with disabilities an alternative to institutionalization. This report highlights three states’ self-directed care programs that include older adults and people with physical disabilities.
Findings suggest consumer-directed programs can improve quality of life and health outcomes and can help meet participant needs without increasing Medicaid fraud.
Medicaid-funded consumer direction- programs allow enrollees to directly hire people, including some family members, to provide personal care, such as bathing, dressing, and toileting. According to the National Council on Disability, consideration of consumer-directed personal care options began in the late 1960s and 1970s with calls for increased autonomy and independence by and for people with disabilities. While early pilot programs focused on people with disabilities, the model – and its core values of autonomy and dignity – have since been applied to programs for older adults. Findings from the Cash and Counseling Demonstration Program suggest consumer-directed programs can improve quality of life and health outcomes and can help meet participant needs without increasing Medicaid fraud. While small-scale studies have shown savings, states can also incorporate cost-containment mechanisms into these models through waiver enrollment or spending caps, or reimbursement methodologies that limit consumer-directed care payment to a percentage of agency rates.
States are increasingly using consumer-directed models; according to Applied Self-Direction, all 50 states and Washington, DC have at least one consumer direction LTSS option. Several federal initiatives, Centers for Medicare & Medicaid Services (CMS) guidance beginning in the early 2000s, the Deficit Reduction Act of 2005, and creation of the Community First Choice state plan option under the Affordable Care Act have expanded states’ ability to provide these programs. This trend is likely to continue as states:
- Seek to address issues raised by the COVID-19 pandemic;
- Promote equity and access to services in underserved communities; and
- Address growing work force shortages.
Modifying or expanding consumer-directed programs can be an important strategy.
How States Can Develop Consumer-Directed Programs
States have multiple decision points when developing a Medicaid consumer-directed program.
Medicaid Authority: States can use various Medicaid authorities to support consumer-directed options that allow family members to receive reimbursement for providing care. Policymakers have many factors to consider when designing these waivers and/or state plan amendments, such as whether to expand Medicaid eligibility, whether to target specific populations or geographic areas, and what services and supports should be provided.
The majority of states operate consumer-directed programs through the Medicaid 1915(c) home- and community-based waiver (HCBS) authority. Using 1915(c) waivers, states can modify eligibility requirements, target services to particular areas of the state, and/or limit or tailor services to certain populations, such as older adults or adults with physical disabilities who are at risk of institutionalization. States can, depending on the authority, add self-direction options for different services into a single waiver.
Chart: Medicaid Authorities and Consumer-Direction Options
| Medicaid authority | Is institutional level of care required? | Can states waive comparability? | Can states waive statewideness? | Financial management services required? | Budget authority/
cash payments allowed? |
Limits on reimbursing family caregivers |
| 1905 (a) (24) state plan personal care services | As medically necessary | No | No | Only fiscal employer agent required | Neither budget authority nor cash payments are allowed | Excludes “legally responsible individuals” |
| 1915(c) Home and Community-Based Services | Yes | Yes | Yes | Yes | Budget authority is allowed, but cash payments are not | Allows relatives, legally responsible individuals, and legal guardians |
| 1915 (i) Home and Community-Based Services state plan option | No (allows individuals with less than institutional level-of-care requirements depending on certain types of eligibility) | Yes | No | Yes | Budget authority is allowed but cash payments are not | Allows relatives, legally responsible individuals, and legal guardians |
| 1915(j) self-directed personal assistance services state plan option | No, if receiving services through state plan and state plan does not require it
Yes, if receiving services through a 1915 (c) waiver |
Yes | Yes | Yes, unless participants choose to receive cash directly | Budget authority is required, cash payments are allowed | Allows legally responsible relatives |
| 1915(k) Community First Choice State Plan Option | Yes | No | No | Yes, depending on the model selected | States may allow budget authority and cash payments to participants depending on the model selected | Allows legally responsible individuals, relatives |
| 1115 Demonstration Waiver | Determined by state | Determined by state | Yes | Yes, when incorporating participant- direction | States may allow budget authority and cash payments to participants | Allows legally responsible individuals, relatives |
Sources:
Authority Comparison Chart. HCBS Technical Assistance Web Site. Center for Medicare and Medicaid Services. Accessed Dec. 31, 2020.
Home and Community Based Services Authorities. Medicaid.gov. Centers for Medicare and Medicaid Services. Accessed Dec. 31, 2020.
Self-Directed Services, Medicaid.gov (Centers for Medicare and Medicaid Services), accessed Dec. 31, 2020.
Participant Direction Features of the Optional Medicaid Authorities, Table 7-1, p. 182. O’Keeffe, Janet, Paul Saucier, Beth Jackson, Robin Cooper, Ernest McKenney, Suzanne Crisp, and Charles Moseley. Understanding Medicaid home and community services: A primer, 2010 edition. Washington DC: US Department of Health and Human Services and RTI International, 2010.
Wolff, Jennifer, Karen Davis, Mark Leeds, Lorraine Narawa, Ian Stockwell, and Cynthia Woodcock. Family Caregivers as Paid Personal Care Attendants in Medicaid. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health, 2016.
Enrollee authority: States can determine how care recipients manage their budgets, caregivers, and services:
- Employer authority permits recipients to directly recruit and manage their service providers. Employer authority is integral to the consumer direction model. Depending on the authority, states have some flexibility to determine which employer responsibilities can be consumer-directed.
- Budget authority allows enrollees to manage their budgets and purchase other goods and services. States also have flexibility in determining what types of goods and services can be purchased under budget authority.
Enrollee supports: States are required to provide supports for enrollees in managing the consumer-direction process, which can include training and assistance, information about responsibilities, or access to financial management services. For example, Virginia’s 1915(c) waivers include a “services facilitator” to support individuals in managing consumer-directed services.
Definition of “family:” States have discretion to determine who may provide HCBS under consumer direction. Under most authorities, states have flexibility to allow services to be provided by family members, including “legally responsible individuals” such as spouses or parents of minor children under specific circumstances. Within the 1915(c) waiver, for example, states have the option to allow relatives to provide waiver services, and/or allow legally responsible individuals, such as spouses and parents of minor children, to provide personal care services. When delivering personal care-related services, the legally responsible person must be providing care that is beyond the care normally expected of a spouse or parent. In defining family for reimbursement, the state plan personal care option is the exception: legally responsible individuals may not be paid under this authority to provide personal care services.
Training and workforce requirements: State Medicaid agencies often require background checks or certification requirements for caregivers.
- States vary in the specifics of the training requirements for caregivers hired under consumer direction. Florida does not require licensing or certification to provide personal care, homemaker, or adult companion services, but does require licensure for attendant care.
- States can, through legislation, specify the types of tasks that can be delegated by a nurse to an unlicensed caregiver who receives training, as in the example of Virginia’s regulations on nurse delegation. The AARP 2020 LTSS Scorecard found that 26 states allow nurses to delegate at least 14 health maintenance tasks to be performed by a direct care aide, such as medication administration, respiratory care, tube feeding/gastric care, and/or bladder regimen and skin/appliance care-related tasks.
Use of representatives: Participants can choose to have a representative assist them with managing their consumer-directed services. Individuals may appoint a family member as a representative, but that family member cannot be paid to be the participant’s representative, or provide paid care to the participant. (Note: Due to the COVID-19 emergency, emergency flexibilities may allow states to waive certain requirements during the public health emergency. For example, West Virginia’s Appendix K for its 1915[c] waivers allows legal representatives to receive payment for certain personal care-related services under specific circumstances during the emergency.)
Three State Approaches
States can structure consumer-directed program options in a variety of ways, reflecting the needs of their residents. After a nationwide scan of Medicaid waivers and state plan options for older adults and adults with physical disabilities, the National Academy for State Health Policy (NASHP) identified three states — Connecticut, Florida, and Virginia — that have long-standing consumer-directed care programs and illustrate the various policy strategies available to states to help Medicaid enrollees (and their family caregivers) who are older adults or have physical disabilities live in their communities.
Connecticut’s 1915(k) Community First Choice (CFC) State Plan Amendment was approved in 2015. Enrollees in Connecticut’s CFC option may hire, supervise, and train their own staff and manage their budgets themselves or with support of an individual other than a spouse or legally liable individual.
- Medicaid authority: 1915(k) Community First Choice (CFC) state plan option
- Services: Attendant care, transitional services, home-delivered meals, environmental accessibility adaptations, assistive technology, and voluntary training on how to hire/manage/dismiss staff
- Family caregivers: Enrollees in the CFC option can hire family members or other individuals as long as they meet qualification requirements. (Excludes spouses and legally responsible individuals, health care representatives, conservators, or guardians.) Caregivers may live in the home.
Enrollees create job descriptions. Participants who choose to hire an attendant can request a pay rate subject to approval of the state. They can offer a particular wage if they believe the job description merits it (e.g., special skills, fluency in a particular language, etc.). In its 1915(k) SPA, Connecticut recommends that attendants, “be at least 16 years of age; have experience providing personal care; be able to follow written or verbal instructions given by the individual or the individual’s representative or designee; be physically able to perform the services required; and be able to receive and follow instructions given by the individual or the individual’s representative or designee.” Connecticut provides access to additional employee training opportunities, such as coordinating with a community college to provide personal attendant training certification or certified nursing assistant (CNA) training for personal care assistants (PCAs).
The Medicaid enrollee is considered the employer. The state’s Division of Health Services (DHS) establishes the budget and determines how much of the budget can be spent each month. If participants continually exceed their budget, they may lose access to the option, and DHS also tracks underutilization. While DHS does not specifically track the use of paid family personal care providers, a state official estimates that approximately 30 percent of the roughly 4,000 individuals who use the service engage family caregivers as PCAs. Connecticut’s CFC option can include older adults and people with physical disabilities, and Medicaid enrollees who require institutional levels of care are eligible.
Monitoring for fraud and abuse. Connecticut’s Quality Assurance unit examines referrals and has systems and controls in place to examine and flag PCA hours. One example of a system control is related to the state’s policy that disallows PCA services while a member is hospitalized. To disallow payments to PCAs submitting claims during their employer’s hospitalization, Connecticut’s Medicaid Management Information System (MMIS) compares PCA claims for the enrollee to hospital claims for the enrollee. If there is a hospital claim on the same day as a PCA’s claim, the PCA claim is not paid. In addition, the fiscal intermediary monitors for fraud and abuse. The state also established a fraud and abuse hotline and online reporting capacity to encourage public reporting.
Reimbursement. Connecticut established a universal assessment to evaluate levels of care for all Medicaid enrollees with HCBS needs in 2015, at the same time as the CFC option was being developed. Data from this universal needs assessment has been used since then to determine tiered budget groupings within the CFC option as well. Because CFC budgets are driven by the universal assessment — as are its other HCBS programs – a Connecticut state official reported costs did not differ greatly across programs. The state is in the process of working with consultants, including the University of Connecticut, to review the tool and the data collected from the universal assessment and to revise the current budget groupings.
Payment. The fiscal intermediary pays the PCA, then submits claims for reimbursement through the Medicaid Management Information System (MMIS). The state sends information about individual budgets to the fiscal intermediary. If enrollees want to pay their PCAs a different payment rate than listed in their individual budgets, they must submit documents about how risk would be managed. This is because individual budgets are based on needed hours at the minimum wage rate. While it is permissible for participants to request higher wages, this decision decreases the number of hours available within the budget. In 2020, Connecticut selected Allied Community Resources as its fiscal intermediary through a request for proposals. The provider fee schedule is posted at ctdssmap.com. As of 2020, PCAs in Connecticut are unionized and their minimum payment rate has increased. Some program costs also have increased accordingly.
Florida
In Florida’s participant-directed option (PDO), the managed care plan sets the fee schedule and makes payments. The PDO, which is provided by Florida’s Statewide Medicaid Managed Long-Term Care program, can serve both older adults and people with physical disabilities. The enrollee has responsibility for finding, training, and managing workers, setting hours, reporting fraud or abuse, and submitting timesheets to the managed care plan, among other responsibilities.
- Medicaid authority: Statewide Medicaid Managed Care Long-Term Care (LTC) 1915(b)/(c) waiver, which includes a participant-directed option (PDO)
- Services: Allows five services through PDO: adult companion, homemaker, attendant care, intermittent and skilled nursing, and personal care services
- Family caregivers: Legally responsible individuals, including spouses, can provide PDO services as long as the caregiver is qualified, has executed a PDO work agreement, and has passed the necessary background checks; the enrollee can live in their own home or in a family member’s home.
The PDO initially began as a consumer direction pilot in 2000 administered by the state’s Agency for Health Care Administration (AHCA) and the Department of Elder Affairs (DOEA). In 2013, the participant-directed option was transitioned into the Statewide Medicaid Managed Care Long-Term Care (SMMC-LTC) program. Eight managed care plans offer PDOs. As of June 2020, slightly more than 119,000 enrollees were enrolled in the SMMC-LTC program overall. According to state data, out of 51,848 HCBS enrollees, 7,841 were participating in the PDO as of June 2020.
Specific family caregiver hiring information is not reported in the care plan, although all care is documented in the care plan, including whether services are administered through the PDO or traditional options. Because the PDO offers flexibility in hiring caregivers, the option can be used by enrollees who desire culturally competent caregivers, or who are not satisfied with other available options. Legally responsible individuals, including spouses, can receive reimbursement. In 2020, Florida included a caregiver training benefit as part of its LTC Waiver. Training is available based on a caregiver assessment administered through the managed care plan. Each managed care plan has its own training program. This caregiver training support can be utilized only for unpaid caregivers, however.
Monitoring for fraud and abuse. The Agency for Health Care Administration (AHCA), Florida’s Medicaid agency, monitors for fraud and waste through the state’s contracted Medicaid managed care plans, which are required to provide fiscal/employer agent (F/EA) services. The managed care plan either operates as a F/EA, or subcontracts to an F/EA vendor. The managed care plan is responsible for fulfilling certain F/EA-related tasks, including reporting of underutilization to participants/case managers, and following up with timesheet issues. AHCA conducts a desk review every quarter, which involves an audit process for compliance.
Reimbursement. Each plan has a designated fee schedule, and there are no caps from AHCA on the number of PDO hours that can be received by an enrollee, which is determined by medical necessity. Managed care plans or their vendors who serve as F/EAs provide payroll and tax management services for participants and are responsible for processing and payment of all applicable taxes on behalf of participants and their workers.
Virginia
Virginia’s consumer-directed option began in the mid-1990s and was available only to individuals with physical disabilities. Virginia’s options expanded over time to include individuals with cognitive impairment, and additional services, such as companion services and respite. These consumer-directed program services have since been incorporated into Virginia’s HCBS waivers. Consumer direction for older adults and people with physical disabilities is part of the Commonwealth Coordinated Care Plus (CCC Plus) program operated under a 1915b/c waiver.
- Medicaid authority: Commonwealth Coordinated Care Plus 1915(b)/(c) waiver program
- Services: Participants have the option to self-direct personal care and respite services
- Family caregivers: As of 2020, relatives other than spouses or parents of minor children can be reimbursed for services, however, during the pandemic, spouses and parents of minor children can be reimbursed for care.
Enrollees selecting consumer direction are provided with a list of “services facilitators” as part of the screening process for level-of-care eligibility assessment (administered by local Virginia Department of Health nurses and physicians or local departments of social services’ family services specialists). Services facilitators are Medicaid-enrolled providers who support participants in managing their consumer directed services. Services facilitators can:
- Assess a participant for particular consumer-directed services;
- Help develop a plan of care; and
- Provide training and support to the participant in performing their role as employer.
Participants can select workers and are considered the employer, but do not have decision-making authority over the budget. Within CCC Plus, a legally responsible relative can serve as the participant’s representative and be the employer if the participant is not independently able to self-direct care, but this relative cannot also be a services facilitator, paid caregiver, or attendant. Spouses and parents of children cannot be paid to provide personal care services, but other relatives can be paid under specific circumstances. Currently, flexibilities instituted due to COVID-19 under Virginia’s Appendix K waiver allow spouses and parents of children to provide services during the public health emergency.
Consumer direction is available for members living in their own homes or in family members’ homes. An estimated 40 percent of caregivers are family members, according to key informant estimates.
Monitoring for fraud and abuse. Payments to family caregivers under the CCC Plus program are monitored through the Quality Management review process in the Department of Medical Assistance Services (DMAS) using the same processes used to monitor other home-based and personal care services. However, if payments are made to a family member living in the same home as the participant, the member must provide documentation to justify hiring the relative who lives in the same home as an “option of last resort.” There are no limits that are specific to relatives on the number of hours of services that can be furnished.
Reimbursement. Participants in Virginia’s consumer-directed option must use a fiscal/employer agent, who conducts payroll functions on the participant’s behalf, including payment and withholding. DMAS issued a request for proposals to select the state’s fiscal/employer agent. The fiscal/employer agent must also process background checks. Managed care organizations in CCC Plus contract with a fiscal/employer agent, and follow the same processes as the state for consumer-direction. In the 2020 budget, a 5 percent increase beginning July 2020 and a 2 percent increase beginning in July 2021 to the salary rate for attendants was approved. Time and a-half payment up to 16 hours was also approved for attendants working over 40 hours per week providing Medicaid consumer-directed personal assistance, respite, and companion services.
Lessons Learned
State policy leaders interviewed for this report all expressed value for program flexibility and choice for enrollees receiving care. They also noted the broader state goals of providing home- and community-based services alternatives over institutional services as a critical factor in supporting self-direction for people requiring institutional levels of care, and paying family caregivers. Across the highlighted states, additional themes emerged:
-
- Consumer direction provides an important opportunity to support health equity and culturally competent care. By giving enrollees flexibility to select caregivers and employ family members, states enhanced their ability to support the needs of underserved populations. Both Florida and Connecticut officials highlighted that the consumer-directed option allowed participants to hire caregivers who met their cultural and linguistic needs. Connecticut’s Community First Choice state plan option allows enrollees, as the hiring employer, to develop job descriptions that can include speaking a specific language or possessing a particular type of certification.
- Paying family caregivers can be a cost-neutral Medicaid rebalancing strategy. States can set comparable (or lower) rates for family caregivers, manage service utilization, and support more individuals in home and community settings. Connecticut state health officials anticipated a shift from institutional care toward community-based services through use of its Community First Choice (CFC) option, and results are tracking accurately to the state’s initial estimates. Connecticut also reports a lower dependence on home health agencies. Utilization of Connecticut’s CFC program has grown since 2015, but a state official noted significant savings in other services. The CFC option also benefits from a 6 percent enhanced federal match. A state official in Florida also noted that the state PDO’s lower service costs make the program competitive when compared to similar services provided by a traditional vendor.
- Outreach to Medicaid enrollees is critical. States noted that the complexity of these programs can be a challenge to enrollment, particularly among participants who are uncertain about whether they would be required to manage their own budgets. Due to the COVID-19 pandemic and interest in avoiding facility-based care, states may have a heightened opportunity to raise awareness about consumer-directed options for personal care-related services.
Effects of COVID-19
Enrollment support for consumer-directed programs in the three states has increased as reliance on family caregivers grew during the pandemic:
- Within a week of declaring the emergency, Connecticut permitted expedited enrollment so enrollees could hire family caregivers, and the state also allowed overtime. Connecticut has commissioned a report from the University of Connecticut to examine the impact of COVID-19 on LTSS.
- Florida encouraged enrollment in its PDO to obtain or provide care during COVID-19, and the state has since documented an increase in new enrollees. State administrators report they are not concerned about sustaining their managed care PDO option because the option is cost-effective.
- Virginia officials noted that family members have been designating themselves as live-in caregivers in response to COVID-19. Virginia used CARES Act funding to provide personal protective equipment (PPE) to caregivers and advocate in particular for caregivers of color. CARES Act funding was also used to provide COVID-19-related hazard pay to consumer-directed caregivers who worked during the first few months of the pandemic.
- States may want to consider enhancing data collection to better identify family caregivers who are reimbursed through consumer-directed programs. States do not currently track whether enrollees in consumer-directed programs hire family members. States can consider tracking data on family caregivers within consumer-directed options to better understand the fiscal and health impact of incorporating family caregivers within these programs. Virginia officials are interested in developing mechanisms to encourage individuals who provide care to identify themselves as family caregivers. States could also support data collection to better analyze whether services are reaching at-risk populations and to better support underserved populations, including caregivers of different ethnic or racial backgrounds.
- States have a number of strategies they can use to prevent fraud and abuse. A 2017 GAO report notes that personal care services are particularly prone to incomplete data, overbilling, and risk of neglect for vulnerable enrollees. States can incorporate a range of policies that can mitigate the risk of fraud while improving the quality of care, such as:
- Criminal background checks;
- Service provider requirements and training; and
- Use of care managers.
States can also leverage electronic visit verification (EVV) technology (mandated by the 21st Century Cures Act for personal care and home-based services) to mitigate fraud and abuse. Anticipating the particular needs of consumer-directed enrollees and family caregivers can help. Also, flexible scheduling, user-friendly technology, and active engagement of stakeholders in implementation can avoid challenges. Florida noted that some MCOs provide tablets to family caregivers to utilize for EVV.
- Understand how employment and scope-of-practice laws can affect family caregivers receiving reimbursement through a consumer-directed option. Family caregivers can be considered employees and subject to a range of state and federal regulations that can impact state Medicaid programs. When the US Department of Labor issued a Final Rule regarding the Fair Labor Standards Act (FLSA) that live-in caregivers for specific services could be included in receiving overtime, Florida noted that overtime hour claims increased. Plans subsequently required use of in-network providers for service hours over 40 hours per week. While Virginia’s program focuses on caregivers who do not provide services that licensed or certified professionals provide, Virginia’s Nurse Practice Act has been amended to allow a nurse to delegate authority to caregivers to render certain tasks without violation of licensing regulations under specific circumstances.
Conclusion
The COVID-19 pandemic is reinvigorating long-standing state efforts to support older adults and others with LTSS needs while reducing reliance on congregate settings of care. Reimbursing family members to provide some services can help states rebalance long-term care toward more home- and-community-based options and promote more person-centered long-term care, especially for underserved populations. These considerations are particularly important as states consider winding down various program changes put in place in response to the pandemic. As policymakers consider ways to support enrollees while balancing financial considerations, robust consumer-directed options that engage family caregivers can provide important and person-centered strategies for long-term care.
Acknowledgements: The National Academy for State Health Policy (NASHP) thanks Dawn Lambert, Co-Leader, Community Options Unit, Division of Health Services (CT), Karen Kimsey, Director, Department of Medical Assistance Services (VA), and Eunice Medina, Bureau Chief, Medicaid Plan Management Operations, Agency for Health Care Administration (FL) for sharing their time, expertise, and input on this report. NASHP also greatly appreciates The John A. Hartford Foundation for its support of NASHP’s work related to family caregiving and state policy.
In Their Own Words: Family Caregivers from Across the Country Share their Priorities and Recommendations
/in The RAISE Act Family Caregiver Resource and Dissemination Center Featured News Home, Reports Chronic and Complex Populations, Council Meeting Materials and Resources, Long-Term Care, State Resources, The RAISE Family Caregiver Resource and Dissemination Center /by NASHP Staff
Three-fourths of the responses came from family caregivers across the age spectrum and of varying racial and ethnic backgrounds, with the remaining from organizations. The responses convey the financial, physical, and emotional stresses that caregiving creates and capture the intense need that caregivers have for appropriate financial supports, the ability to have some time off, and help with everyday tasks.
The RAISE Council will incorporate this input in its report to Congress. This report was made possible by funding from The John A. Hartford Foundation to NASHP’s RAISE Family Caregiver Resource and Dissemination Center in collaboration with the ACL.
Report: In Their Own Words: Caregiver Priorities and Recommendations: Results from a Request for Information, by LeadingAge LTSS Center at UMass Boston and Community Catalyst, February 2021.
Infographic: Family Caregiver Priorities, Concerns, and Recommendations: An Overview of Public Input, February 2021.
States Use Appendix Ks to Provide Innovative Flexibilities for Medicaid Enrollees and Caregivers during COVID-19
/in The RAISE Act Family Caregiver Resource and Dissemination Center Connecticut, Georgia, Washington Blogs, Featured News Home Care Coordination, Chronic and Complex Populations, Cost, Payment, and Delivery Reform, COVID-19, Long-Term Care, Medicaid Managed Care, Population Health, State Resources, The RAISE Family Caregiver Resource and Dissemination Center /by Salom Teshale, Paige Spradlin, Wendy Fox-Grage and Kitty PuringtonDuring the COVID-19 pandemic, states have used the Appendix K Emergency Preparedness and Response authority to amend Medicaid 1915(c) home- and community-based services (HCBS) waivers and quickly provide more flexible services and supports to Medicaid enrollees and, indirectly, their caregivers.

During the emergency period, states can temporarily modify waiver features, such as the types of services and providers included under the waiver, reporting requirements, payment rates and retainer payments, and modes of service delivery such as telehealth. States can also temporarily increase the unduplicated number of participants (Factor C) and make a host of other temporary changes. Appendix K provides flexibility without providing new funding to states, and states cannot use Appendix K to make changes not allowed under statute.
This report highlights examples of innovative modifications incorporated through Appendix K amendments by Connecticut, Georgia, Utah, and Washington to support older people, adults with physical disabilities, and their caregivers during the pandemic. Additional information about states’ use of Appendix K, including more information on other approaches taken by the four states highlighted below, can be found on NASHP’s interactive map of state Appendix K amendments. This map is part of NASHP’s RAISE Act Family Caregiver Resource and Dissemination Center, funded by The John A. Hartford Foundation and in collaboration with the US Administration for Community Living.
Connecticut: Maintaining Key Services while Limiting COVID-19 Exposure
Connecticut submitted multiple Appendix K amendments for multiple home- and community-based services waivers, including the Personal Care Assistance (PCA) and Home Care Program for Elders waivers, in order to leverage federal flexibility to sustain services while maintaining social distancing for especially vulnerable older adults and people with disabilities.
Through its Appendix K amendments, Connecticut is supporting remote delivery for a range of services such as adult day programs, counseling, evaluation and assessment. The state has permitted family members to receive payment for providing certain personal care-related services in the home, added home-delivered meals to the PCA waiver, and allowed additional or non-traditional home-delivered meal providers for both waivers. These changes have allowed participants to maintain connections and receive support while reducing the risk of exposure to the virus.
To help Medicaid enrollees get the long-term services and supports they need during the COVID-19 crisis, states use waivers and amendments granted by the Centers for Medicare & Medicaid Services to add flexibility in their program delivery.
Many states have used these tools to modify their home- and community-based services for older adults and their family caregivers during this crisis.
Connecticut’s Department of Social Services reports positive feedback on the changes, noting that modifications have effectively supported continuity of care for waiver enrollees. For the Home Care Program for Elders and PCA waivers, other important changes in Connecticut included temporarily allowing emergency increases in individual cost limits for current enrollees, and, within the Home Care Program for Elders waiver, allowing substitution of lower- level staff in the service plan when necessary.
Georgia: Paying for Services in Temporary Living Situations
Georgia drafted multiple combined Appendix K amendments for two of its waivers, the Elderly and Disabled waiver and the Independent Care waiver. During the emergency, among other changes, Georgia now allows family caregivers in neighboring states to receive reimbursement for providing care when the Georgia Medicaid waiver beneficiary is temporarily living with and relying on care from them during the pandemic. The state also permits family caregivers or legally responsible individuals to receive payment for providing certain personal support services and out-of-home respite. Georgia allows certain specified waiver services, including respite, to be delivered in temporary living situations, including hotels and other accommodations both in and out of state.
Utah: Allowing Payment to Nontraditional Meal and Transportation Providers
Utah used a combined Appendix K amendment to make emergency changes across seven of its waivers. Among these waivers, the Aging, Physical Disabilities, and New Choices waivers cover older adults and people with physical disabilities. Among a range of changes and flexibilities, Utah’s combined Appendix K amendments expand provider types to permit service delivery by nontraditional providers and in alternate settings. For home-delivered meal services, Utah added the ability to use delivery services such as DoorDash and UberEats in a community meal option. For non-medical transportation, the state currently allows reimbursement for non-enrolled providers, such as Lyft or Uber drivers.
Utah also expanded provider types for environmental adaptations, specialized medical equipment, and assistive technology to include the use of a purchase card to buy items from nontraditional vendors on a case-by-case basis. The state now permits direct care services, respite, day supports, and supported employment to be provided in nontraditional settings, such as churches, hotels, shelters, or the home of a direct care worker for participants who are displaced from their home due to COVID-19, or when providers are unavailable due to COVID-19. Day supports may also be allowed in an enrollee’s home. Utah also temporarily increased the unduplicated number of participants by 250 for its New Choices waiver.
Washington State: Providing a Lifeline to Adult Day Centers
To support Medicaid enrollees who rely on long-term services and supports, their family caregivers, and long-term care workers, Washington State instituted multiple Appendix K amendments to multiple waivers, including three of its home- and community-based services waivers: the Residential Support, Community Options Program Entry System (COPES), and New Freedom waivers.
Noting that key HCBS providers – such as adult day centers – that rely on face-to-face contact were at risk of shutting down, the state used Appendix K amendments to implement retainer payments during the pandemic. One official noted that the state’s ability to offer these retainer payments, and to permit day support services to be delivered both remotely and outside the adult day care setting, have been critical to maintaining care and keeping adult day centers open during the pandemic. Washington also used Appendix K amendments to, among other changes, allow up to two daily home delivered meals (in COPES and New Freedom waivers), and support the cost of Personal Protective Equipment (PPE) as part of specialized medical equipment and supplies for beneficiaries (in COPES and Residential Support waivers).
What’s Next?
While these policies are temporary, understanding the impact of these changes on the cost and quality of care for Medicaid enrollees and their family caregivers will be important in determining whether some or all of these innovations should continue after the pandemic.
States may want to consider which flexibilities provide long-term value by reviewing how reimbursement to alternative providers (such as family caregivers) and in alternate settings impacts their costs, quality, utilization, and/or waiver capacity. States may also consider how or whether newly developed infrastructure, such as telehealth, alternative providers, and service delivery mechanisms, can improve care options post-pandemic. States can also apply for a Section 1115 Demonstration opportunity to evaluate how flexibilities undertaken during the COVID-19 emergency affected the provision of care for Medicaid enrollees. States can engage Medicaid enrollees and their family caregivers to better understand impact, identify other potential innovations, and to prepare for future emergencies.
The National Academy for State Health Policy will continue to update its interactive map of state Appendix K amendments to cover policy changes that emerge as a result of the ongoing pandemic.
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For individuals living with complex, often chronic conditions, and their families, palliative care can provide relief from symptoms, improve satisfaction and outcomes, and help address critical mental and spiritual needs during difficult times. Now more than ever, there is growing recognition of the importance of palliative care services for individuals with serious illness, such as advance care planning, pain and symptom management, care coordination, and team-based, multi-disciplinary support. These services can help patients and families cope with the symptoms and stressors of disease, better anticipate and avoid crises, and reduce unnecessary and/or unwanted care. While this model is grounded in evidence that demonstrates improved quality of life, better outcomes, and reduced cost for patients, only a fraction of individuals who could benefit from palliative care receive it. 























































































































































