Family 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.
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.
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.
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|
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.
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.
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.
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’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.
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.
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.
- 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.
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.
Older adults, people with disabilities, and their family caregivers have been hard hit by COVID 19. As states reel from the pandemic’s human and fiscal toll, policymakers are increasingly looking to home- and community-based services (HCBS) to address the pressing need for alternatives to nursing home care and supporting family caregivers who can help loved ones age in place.
Recent actions signal that the importance of HCBS is gaining traction at the federal level, and may receive significant attention in the coming months:
- The American Rescue Act, passed last month, includes a one-year, 10-point boost in Federal Medical Assistance Percentage (FMAP) for HCBS delivered between April, 2021 and March, 2022. The funding must supplement – not supplant – current state expenditures, and can be used for an expansive list of HCBS. These include Medicaid waiver services, but also case management and rehabilitative services, which are often used to support people with serious mental illness. The Centers for Medicare & Medicaid Services recently held a “listening session” to gather input for guidance that will be issued in the near future.
- The American Jobs Act, released by the White House on March 31, 2021, has been touted by the Biden Administration as an historic opportunity to rebuild America’s infrastructure. Interestingly, a full quarter of the total $1.2 billion proposed expenditure would go to “expanding access to quality, affordable home- or community-based care for aging relatives and people with disabilities.” The plan targets expansion of Medicaid HCBS and would improve wages and conditions for the nation’s direct care workforce, a majority of whom are women of color.
- Also last month, a group of members of Congress – Rep. Debbie Dingell (D-MI), Sen. Maggie Hassan (D-NH), Sen. Bob Casey (D-PA), and Sen. Sherrod Brown (D-OH) – sought input on the HCBS Act of 2021, draft legislation that would make HCBS a mandatory benefit in state Medicaid plans and expand the kinds of services offered, among other changes.
In the short term, states will need to act quickly to develop time-limited strategies to take advantage of the Federal Medical Assistance Percentage (FMAP) enhancement offered by the American Rescue Plan, and be prepared for other funding and policy opportunities as they emerge. States may choose to add enrollees to their existing HCBS programs, expand access by enhancing direct care workforce pay, focus on services to support family caregivers, and/or build on existing programs.
Explore the National Academy for State Health Policy’s (NASHP) State PACE Action Network for a new technical assistance opportunity for states to enhance or expand this home- and community-based services model. NASHP will continue to track these issues, and provide updates on state and federal initiatives that reflect the growing importance of HCBS.
The National Academy for State Health Policy (NASHP), with support from the Health Resources and Services Administration (HRSA) through the National Organizations of State and Local Officials (NOSLO) program, invites states to apply to its second Health and Housing Institute. The goal of the Institute is to break down inter-agency silos and strengthen services and supports to help low-income and vulnerable populations become and remain successfully housed.
Teams must include:
- One person from senior Medicaid leadership;
- One person from senior state housing agency leadership; and
- [Optional] Others based on the state’s project focus. For example, public health, state education, transportation or social service agency representatives, other payers, Medicaid managed care organizations, state data analytics staff, legislators, local officials, community-based partner organizations, governors’ health policy advisors, and individuals with lived experience.
Each state team will be expected to:
- Maintain a core team of at least two members, including participants from the state’s Medicaid agency and a housing agency should have decision-making authority within their respective agencies. States are welcome to include additional team members.
- Develop a project plan and work toward accomplishing goals and actionable steps to achieve these goals.
- Participate in quarterly individual team technical assistance calls with NASHP staff to identify progress and barriers as well as identify any emerging technical assistance needs.
- Revise project plans as necessary to improve your state’s initiative during the two-year technical assistance period.
- Participate in group activities as planned, including the annual meetings and quarterly state-to-state learning calls.
To apply: Each state team must complete an Expression of Interest Form (linked above) and submit it to Allie Atkeson (firstname.lastname@example.org) by COB on Friday, April 30, 2021.
More information: Any questions about the Health and Housing Institute application process should be directed to Allie Atkeson (email@example.com).
Overview of Health and Housing Institute Opportunity
Evidence shows a strong association between access to safe, affordable, and stable housing and positive health outcomes. At the beginning of the COVID-19 pandemic, states moved to rapidly rehouse individuals in congregate and institutionalized settings to slow the spread of the virus. As rapid rehousing is a temporary solution, states identified a need to provide individuals with additional wraparound and supportive services to maintain housing.
States have the opportunity to shift investments from episodic emergency and institutional care to more sustainable community and supportive housing solutions. States can also capitalize on newly available federal resources through the American Rescue Plan and American Jobs Plan to support their efforts. Housing is an essential social determinant of health and there is a demonstrated need for equitable and targeted access for populations, such as those experiencing homelessness, housing instability, behavioral health needs, and chronic conditions and those transitioning out of institutions.
Through the institute, NASHP will work with state Medicaid and housing agencies and other state policymakers from five states to address the challenges of sustainably financing health and housing initiatives. Discussions will also address related challenges of measuring program outcomes, ensuring equitable access to housing-related services, demonstrating return on investment, collecting and sharing data among agencies and providers, and determining effective governance structures for cross-sector housing and health initiatives.
Acknowledgement: This project is supported by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) under grant number U2MOA394670100, National Organizations of State and Local Officials. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the US government.
The National Academy for State Health Policy (NASHP) is seeking applications to participate in its State Program of All-Inclusive Care for the Elderly (PACE) Action Network. The network will engage up to five teams of state leaders to expand access to their existing PACE programs. Lessons learned and best practices from this effort will be shared with other states. NASHP is convening the network in partnership with the National PACE Association and with generous support from The John A. Hartford Foundation, the Gary and Mary West Foundation, and the Harry and Jeanette Weinberg Foundation.
PACE can also bring benefits to state Medicaid programs. PACE integrates and coordinates all medical and long-term care services and supports for enrollees across both community and institutional settings. The program is especially valuable for the high-need, high-cost segment of the home- and community-based services (HCBS) recipient population. Because PACE is a capitated program it, like managed care programs, limits Medicaid’s financial risk. With its focus on a challenging segment of the Medicaid population, PACE can help state Medicaid programs ensure that these enrollees have ready access to a range of coordinated, high-quality services and supports that can be critical to maintaining individuals in the community. The access to a consistent set of providers may be especially helpful to the 46 percent of PACE members who have dementia. Some states have found that PACE can complement other HCBS and managed long-term care services and support (MLTSS) programs.
Establishing and administering a PACE program can require significant Medicaid resources. States can, however, structure their PACE programs to minimize the resources needed. California, for example, has aligned PACE program policies with those of its other MLTSS programs in order to minimize the resources needed to administer the PACE program. States can also scale the program so it serves sufficient numbers of Medicaid enrollees to offset the required resources. While most PACE programs are small, six states have at least one PACE organization that serves more than 1,000 patients. Also, of the 138 PACE programs nationwide, 27 are serving an estimated 15 percent or more of the dual-eligible older adults in their service areas.
There are at least three ways to expand access to PACE that interested states could consider.
- Implement Medicaid policies that increase access to existing PACE sites. For example, states can modify managed care program enrollment material and policies to better explain PACE’s benefits, work with managed care organizations to better manage transitions between PACE and other managed care contractors, or speed the assessment and enrollment process.
- Enable existing PACE programs to serve more people in their current service areas. For example, states can achieve this by working with the program to establish a new site within an existing service area or by lifting a cap on enrollment.
- Enable existing PACE programs to serve people in more areas of the state. For example, by working with a PACE provider to establish a site in a new service area or expand an existing service area.
NASHP is launching this network to assist states in helping those who would benefit from PACE access the program. NASHP will serve as a resource and convener to help policymakers connect with peers and experts, identify and share strategies and solutions, and provide insights for other state leaders who are seeking to increase access to PACE. Participating states will achieve the following during this eight-month State PACE Action Network:
- Gain information and insights into policies and practices that:
- Efficiently identify those who would benefit from the program and speed their enrollment,
- Increase the number of people who existing PACE programs may serve, and
- Minimize the resources required to administer PACE
- Develop a work plan for implementing the state’s chosen approach.
- Achieve key milestones to increase access to PACE services.
NASHP is a non-partisan, nonprofit organization with over three decades of experience in helping state policymakers lead. NASHP provides expertise, convenes states, shares innovations and best practices, and supports state policymakers in making concrete and sustainable health system reform. For more information, visit NASHP’s website at www.nashp.org
Team composition: State applicants may identify a core team of up to four members to participate in the network, including at least one state Medicaid official and one PACE representative. Additional members may include other state staff, key state contractor staff (e.g., managed care enrollment broker staff), or representatives from community-based organizations, family caregiver associations, providers, or other key stakeholder groups. Strong candidates will demonstrate existing working relationships among key partners.
Applicants should identify a team lead who can provide overall leadership and serve as the primary point of contact for the project. The team lead must be a Medicaid official. Applicants must describe why that official is the right choice to ensure the state achieves its goals — and commit to providing that individual with sufficient time to fulfill their project responsibilities.
State approach: Applicants will describe their selected approach to increasing access to PACE and explain why they selected that approach.
State goals and initial planning: Applicants should describe specific and measurable goals, and a realistic timeline and activities to achieve these goals.
Technical assistance needs: Applicants should describe what specific expertise, technical support, and other resources would be helpful in making progress.
Submission: To apply to participate in the State PACE Action Network, please complete the brief application.
The application must be submitted electronically to Luke Pluta-Ehlers at firstname.lastname@example.org by 5 p.m. (ET) Thursday, April 15, 2021. NASHP will notify each state of the state of its application status no later than April 26, 2021.
This application is designed to help the National Academy for State Health Policy (NASHP) understand each state applicant’s goals and objectives for participating in its State Program of All-Inclusive Care for the Elderly (PACE) Action Network. NASHP will select states for the network using the criteria described in the request for applications guidelines. Applications and any optional letters of support must be submitted by email to Luke Pluta-Ehlers (email@example.com) by 5 p.m. (ET) Thursday, April, 15, 2021
Interested state teams are encouraged to participate in an informational webinar from 2 to 3 p.m. (ET) Tuesday, March 30, 2021. Register here. For more information, contact Luke Pluta-Ehlers (firstname.lastname@example.org). NASHP will notify each state about the status of its application no later than April 26, 2021.
State applications may include a team of up to four members. The team must include at least one Medicaid official and one PACE representative (e.g., PACE program or state PACE association). The team lead must be a state Medicaid official. The team may include additional state or PACE staff and others who can directly support team goals (e.g., aging agency administrators, managed care enrollment counselors, family caregiver representative, etc.).
Please complete the core team roster below.
Team Member 1 (Team Lead: State Medicaid official)
Team Member 2 (PACE representative)
Team Member 3
Team Member 4
Please respond to the following questions and limit your response to 200 words or less per question.)
- Team lead: Please describe why the identified team lead is the right choice to ensure that your team achieves its goals. Also, please specify the amount of time the lead will dedicate to this project.
- State approach: Please select one or more of the options below and briefly explain why you selected that approach.
_______ Implementing Medicaid policies that increase access to existing PACE sites
_______ Enabling existing PACE programs to serve more people in their current service areas
_______ Enabling existing PACE programs to serve people in more areas of the state.
_______ Other (please specify)
- State goals and initial planning: What specific goals do you hope to achieve within the network’s eight-month timeline? These goals should be specific, measurable, and attainable.
- Technical assistance needs: Please describe up to four topics that you would like learn about and discuss during a network technical assistance event. If there are particular experts you would like to hear from or other resources you need to address the topic, please identify those as well.
During 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.
The Appendix K amendment was developed to reduce states’ administrative burdens during a crisis by enabling states to rapidly modify or add services provided through Medicaid waivers. States can specify proposed effective dates and anticipated end dates for Appendix Ks, which are generally tied to the period of the public health emergency.
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’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).
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.
The National Academy for State Health Policy (NASHP) is hosting a Twitter chat to recognize National Family Caregivers Month. Across the nation, state health programs depend on caregivers who provide critical support to help relatives, friends, and neighbors stay safely in their homes while contributing $470 billion in unpaid health care services each year. Family caregivers reduce the need for home health services and can delay hospitalizations and nursing home care. This Twitter chat will explore how states can provide flexibility, support, and resources to address caregiver needs through effective policy changes.
Please join us at 2 p.m. (ET) Thursday, Nov. 19, 2020 to discuss:
- Challenges/barriers that family caregivers face;
- Family caregiving during the pandemic;
- State innovations to support family caregivers;
- How policymakers can improve education, training, and counseling for family caregivers; and
- Opportunities for the RAISE Family Caregiver Center and Council.
How to Participate
- Follow @NASHPhealth on Twitter.
- Join us on November 19 at 2 PM EST and follow the conversation using #RAISEchat.
- Share your thoughts and ideas on policies and support resources.
- Use links to your website, programs, initiatives, and partners in your tweets to promote the good work you, your organization, and/or state are doing!
- Include #RAISEchat in all of your tweets so chat participants can easily follow you and others during this event.
How it Works
- Each question will be numbered Q1, Q2, Q3, etc.
- Start your responses with A1, A2, A3 etc. to correspond with the question.
- You only have 280 characters per tweet but you’re not limited to only one tweet per question. Use A1a, A1b, A1c, etc. to indicate either a multi-part answer or multiple responses to a given question.
- Q1: It’s National Family Caregivers Month. How is your organization better supporting family caregivers, and do you have new resources to share?
- Q2: What are the main challenges family caregivers face when taking care of a relative?
- Q3: Given that the RAISE advisory council will be creating a national strategy for family caregiving, what do you think the strategy should include to help family caregivers address these challenges?
- Q4: What steps can states take to better support family caregivers? Share state examples.
- Q5: How are your organizations supporting family caregivers during the pandemic?
- Q6: What can states do to bring awareness to caregivers’ contributions?
This chat is an excellent opportunity to highlight some of your exciting initiatives, innovations, and resources!
The Family Caregiving Advisory Council heard expert presentations on the intersection between the National Alzheimer’s Project Act (NAPA) Council and its own mission to guide the creation of a national caregiving strategy during its Aug. 12, 2020 meeting. The caregiving council is tasked by the Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2018 (the RAISE Act) to create a National Family Caregiving Strategy.
Syncing with the National Alzheimer’s Project Act
Katie Brandt, director of Caregiver Supports Services at the Massachusetts General Hospital and cochair of the National Alzheimer’s Project Act (NAPA) Advisory Council, and Helen Lamont, long-term care policy analyst at HHS, designated federal official of the NAPA Advisory Council, and member of the RAISE Advisory Council, gave a presentation on the parallels between the recommendations issued by the NAPA Advisory Council and the Family Caregiving Advisory Council’s tentative federal recommendations to better support family caregivers.
The National Alzheimer’s Project Act was signed into law in 2011. Similar to the RAISE Act, NAPA legislation called for HHS to create a federal advisory council, including federal and nonfederal members, to make recommendations on Alzheimer’s disease and related dementias. The NAPA council first released its national plan to address Alzheimer’s disease in May 2012, which is updated annually. The NAPA council has convened quarterly since September 2011, apart from April 2020, and is expected to make an update to the national strategy in October 2020. With each update, the NAPA council’s recommendations are transmitted to the HHS Secretary and can be considered by Congress for federal funding and policy priorities.
Although states are not explicitly sent recommendations from the NAPA council, some of its recommendations are directed toward states. Due in large part to the NAPA council’s efforts, all but one state has a state plan on Alzheimer’s, many informed by the NAPA council’s recommendations.
Topics covered by the NAPA national strategy include research, clinical care, and long-term services and supports. The five goals for the NAPA council’s national strategy are:
- Prevent and effectively treat Alzheimer’s and related dementias by 2025.
- Optimize care quality and efficiency.
- Expand supports for people with Alzheimer’s disease and their families.
- Enhance public awareness and engagement.
- Track progress and drive improvement.
In their combined presentation, Brandt and Lamont highlighted the following similarities between the NAPA and RAISE councils:
- Many caregivers for older adults also care for those with dementia.
- Many caregivers work with Down Syndrome and I/DD communities, who have a higher risk of developing dementia.
- Both councils recognize the important role of caregivers as well as the importance of integrating caregivers into health care systems.
- Both councils recognize accessible, affordable, and culturally competent long-term services and supports as essential.
- Both councils seek to advance research on care models and interventions to address caregiver needs and person- and family-centered plans.
The NAPA and family caregiving advisory councils will continue to work together on their common goals and inform one another of important, evidence-supported practices to consider for both national strategies.
Refining the Goals for the National Strategy
Greg Link, director of the Office of Supportive and Caregiver Services at the Administration for Community Living (ACL), and Wendy Fox-Grage, project director at the National Academy for State Health Policy (NASHP), led a discussion to refine the Family Caregiving Advisory Council’s goals to help shape its recommendations to Congress. The council adopted the following goals:
- Family caregivers’ physical, emotional, and financial well-being will meaningfully improve as a result of expanded awareness, outreach, and education.
- Family caregivers are recognized, engaged, and supported as key partners by providers of health care and long-term services and supports.
- Family caregivers have access to an array of flexible person- and family-centered programs, supports, goods, and services that meet the diverse and dynamic needs of family caregivers and care recipients.
- Family caregivers’ lifetime financial security and employment security is protected and enhanced.
- Family caregivers are engaged stakeholders in a national research and data-gathering infrastructure that:
- Documents their experiences;
- Translates evidence into best practices
- Develops person- and family- centered interventions; and
- Measures progress toward development of a National Caregiver Strategy.
The Family Caregiving Advisory Council currently is working on its report to Congress. The council’s three subcommittees will meet to discuss and draft recommendations that will be scheduled for consideration by the full council this fall.
The council’s work is supported by a unique collaboration between The John A. Hartford Foundation, ACL, and NASHP. With generous support from The John A. Hartford Foundation, NASHP created the RAISE Family Caregiver Act Resource and Dissemination Center. The center will continue to provide the council with resources to inform and disseminate its work with state and federal policymakers, diverse stakeholders, and the public.
The National Academy for State Health Policy (NASHP) is developing a report on how family caregiving impacts state Medicaid programs, and the role Medicaid plays in supporting family caregivers. Medicaid — jointly funded and administered by the federal and state governments — provides health coverage to millions of Americans, including low-income adults, children, older adults, and people with disabilities. Relatives and friends provide hours of unpaid care to Medicaid enrollees, often making it possible for them to stay in their homes and communities.
This report, scheduled to be published in October, will provide important information to the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiving Advisory Council and will contribute to its report to Congress, which will feature national recommendations to support family caregivers. This initiative is one component of NASHP’s RAISE Act Family Caregiver Resource and Dissemination Center, which is funded by The John A. Hartford Foundation.
The center serves as a national focal point for resources, technical assistance, and policy analysis for states, the broader community of stakeholders, and the public. In collaboration with the Administration for Community Living, the council will provide a framework for how the federal government, states, and communities can better address the needs of family caregivers.