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.
State Medicaid home- and community-based waivers and state plan amendments can provide critical information, counseling, and training to family caregivers. Recently, the National Academy for State Health Policy (NASHP) reviewed states’ Medicaid 1915(c) and 1115 waivers, and 1915(i) and 1915(j) state plan amendments (SPAs) that focuses on waivers and state plan amendments covering older adults and adults with physical disabilities, to highlight their unique approaches to training and supporting caregivers.
Family caregivers provide increasingly intense and complex care that requires them to learn how to perform difficult medical and nursing tasks. Training and other supportive services offered through Medicaid waivers and state plan options can be important tools to assist the caregivers of Medicaid enrollees with long-term needs, promote better care, and potentially delay admission to higher levels of care. As many individuals are confined to their homes due to the COVID-19 pandemic, reliance on these services and supports provided by family caregivers is greater than ever.
Twenty-four states include education, training and counseling for family caregivers in their 1915c and/or 1115 waivers. Fifteen states use their 1915c waivers to provide these services; six states provide services through a 1115 waiver; and three (Minnesota, South Carolina, and Washington State) include services in both 1915c and 1115 waivers. While states often include these services (particularly within 1915c waivers), states varied greatly in identifying which caregivers were eligible for training, education, and/or counseling services and which services were provided. States also varied in their requirements for how the need for these services was documented.
States define informal or unpaid caregivers using a range of familial relationships. Florida, Rhode Island, and Utah define unpaid caregivers in their states’ waivers as “any person, family member, neighbor, friend, companion, or coworker who provides uncompensated care, training, guidance, companionship or support to a person served.” Georgia is the only state to specify that spouses, in particular, currently are not eligible for specific waiver caregiver education and training services. Georgia and Indiana specified in their waiver service definitions that caregivers had to live with care recipients to qualify as caregivers who could receive specific caregiver education and training services.
Several states make distinctions between paid and unpaid caregivers.
- Seven states (FL, CA, MD, OR, RI, UT, WA) provide education and training services for unpaid caregivers. For example, Washington State’s 1115 waiver includes education and training for unpaid caregivers through its Medicaid Alternative Care (MAC) program, and Rhode Island’s 1115 waiver includes unpaid caregiver training and counseling services.
- Four states (HI, PA, WI, MN) specify that both paid and unpaid caregivers may qualify for specific training services. Hawaii’s 1115 waiver and Pennsylvania’s and Wisconsin’s 1915c waivers specify that paid and unpaid caregivers can access specific services. Minnesota’s 1915c waiver specifies that only consumer-directed community supports services can be used to purchase training for paid or unpaid caregivers. Other waiver services are for informal or family caregivers, and its 1115 waiver mirrored the 1915c waiver.
States’ training and education includes a range of topics and modalities. Collectively, states list a range of different types of training related to medical care, including but not limited to education and training on:
- Specified medical equipment;
- Medical treatment;
- Personal care assistance;
- Performance of instrumental/activities of daily living (I/ADLs) or body movements; and
- Disease pathways or specific conditions.
Eight states (MA, MN, NJ, UT, TN, SC, WA, and WI) listed some kind of formalized training related to providing care. Collectively, states listed various types of services, including evidence-based programs, seminars, group training, or reimbursement for conference attendance. For example, Minnesota allows costs of training and conference registration fees to be included in training and education, but does not cover transportation, travel, meals, or lodging. One state, Maryland, explicitly excludes group or classroom training.
Several states also covered caregiver-specific services, such as:
- Financial support for attending caregiver-related training programs;
- Support groups;
- Non-psychiatric counseling services;
- Caregiver coping skills building; and
- Consultation services.
Hawaii, Iowa, Washington, Minnesota, and New Jersey specifically mention counseling or similar services aimed at caregivers. Iowa’s 1915c waiver includes counseling that could address adjusting to a care recipient’s disability or terminal condition. Two states, New Jersey and Washington State in their 1115 waivers, include training on coping skills as a caregiver support. New Jersey offers seminars, including a seminar on coping skills for caregivers of individuals with long-term care needs. Hawaii includes “supportive counseling” and family therapy in its waiver service list.
States require these services to be included in assessments and care plans.
All states with training, education, and/or counseling services for family caregivers include language in waivers that these services must be listed under a care or support plan, evaluation, service plan, therapeutic regimen, or some other type of identification or assessment in order to be reimbursed. Washington State’s 1115 waiver requires caregivers to complete a specified caregiver screening and, as needed, a specified caregiver assessment to determine qualification for specific tiers of services. Tennessee includes caregivers in its face-to-face assessment – assessing caregiver well-being and continued ability to provide care.
States have great flexibility with Medicaid waivers and state plan amendments to provide education, training, and counseling to family caregivers. Several states also incorporate flexibility into the types of training that can be provided to caregivers, often specifying a range of caregiver education, training, and/or counseling opportunities.
Recognizing that states depend on family caregivers to provide critical support to help relatives, friends, and neighbors, especially during the pandemic, NASHP will be publishing state resources on Medicaid policies supporting family caregivers through the RAISE Act Family Caregiver Resource and Dissemination Center with support from The John A. Hartford Foundation and in collaboration with the US Administration for Community Living. NASHP will analyze topics including respite services, reimbursement for caregivers, and paid leave in its future work.
Note: State-only funded programs as well as waivers and amendments for children and people with intellectual/developmental disabilities are not included in this analysis.
Information for Wyoming and Kentucky was not available for this analysis.
To better address the needs of family caregivers, the National Academy for State Health Policy (NASHP) has awarded a subcontract to Community Catalyst, in conjunction with LeadingAge LTSS Center @ UMass Boston and ET Consulting, LLC. The contract will fund these partners to analyze public input from a request for information on family caregiving needs and to conduct listening sessions for the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiving Advisory Council.
These activities will provide critical information to the council, supporting their work in listening to family caregivers, crafting recommendations and building a national strategy to support family caregivers.
This initiative is an important 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 and the broader community of stakeholders.
Under the auspices of 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.
States are the largest public payers for long-term services and supports, and family caregivers are their crucial partners. Across the country, states have launched initiatives that assist family caregivers by addressing their diverse needs. In part to support states in developing these initiatives, the National Academy for State Health Policy (NASHP) launched the RAISE Family Caregiver Resource and Dissemination Center, with generous support from The John A. Hartford Foundation, in league with the US Administration for Community Living (ACL).
In late November, NASHP staff highlighted some of these innovative state policy efforts before the Maryland General Assembly’s Joint Committee on Children, Youth, and Families. In addition to highlighting several state initiatives featured in the NASHP blog State Policy Innovations to Support Family Caregivers, NASHP staff highlighted these innovative state programs before Maryland legislators:
- Virginia’s No Wrong Door initiative;
- Wisconsin’s Aging and Disability Resource Center;
- Tennessee’s TennCare Family Caregiver Assessment protocol;
- South Carolina’s Health Connections Prime Assessments and Quality Initiative;
- California’s Family Caregiver Resource Center; and
- North Dakota’s Service Payment for Elderly and Disabled Program.
These state policy initiatives, as well as policy barriers, are important for consideration by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiving Advisory Council, which was recently created under the ACL and charged with creating a national family caregiver report and strategy.
ACL’s Request for Information
To learn more about challenges, opportunities, and recommendations to better support family caregivers, the ACL will gather information to inform the council’s actions. To assist them, NASHP is asking state policymakers and other stakeholders to respond to ACL’s Request for Information (RFI), which is scheduled to be published on NASHP’s website later this week.
In 2020, the council will be conducting a series of listening sessions. Based on the responses from the RFI, staff and the council will identify the participants and content of the listening sessions. State officials are encouraged to share their valuable insights into policy impediments and solutions.
The information gathered during the RFI process will help inform the council as it prepares a national family caregiving report for the Secretary of the Department of Health and Human Services, which will include recommendations to improve family caregiver support. Based on this report, the council and the Secretary will craft the country’s first national family caregiver strategy. State policymakers are an essential partner in this effort and will add a critical component to the national family caregiver strategy.
November Is National Family Caregivers Month
As many family members gather to celebrate Thanksgiving, November is a particularly good time to thank the estimated 40 million caregivers who care for family members, friends, and neighbors.
NASHP extends its gratitude to state policymakers for all of their hard work and to the families across the county who provide the vast majority of care for the nation’s older adults and people with disabilities.
As the country ages, states recognize the importance of caregivers and are developing new initiatives to support and sustain their critical role in helping relatives, friends, and neighbors age in place. The recent passage of the Recognize, Assist, Include, Support, and Engage Family Caregivers (RAISE) Act, a federal strategy to support family caregivers, brings new attention to this policy issue.
Family caregivers are an essential but uncompensated component of the country’s health care system. They provide nearly $470 billion in unpaid services each year, reducing the need for home health services and delaying the use of costly nursing home care. Medicare does not cover long-term services and supports, and few individuals have private coverage for these services. As a result, state Medicaid programs cover six out of 10 of the country’s nursing home residents and spend $95 billion per year on a broad array of home- and community-based services. States rely heavily on caregivers and the critical supports they provide to millions of older adults and individuals with disabilities.
The National Academy for State Health Policy (NASHP), with support from The John A. Hartford Foundation, convened a state officials-only roundtable at its 2019 annual conference in August to explore this issue in-depth. Policymakers highlighted several state efforts to assist family caregivers and shared how their states have offered additional flexibility, support, and resources to address caregiver needs.
Leveraging State Resources
Minnesota uses state funding strategically to provide services to older adults who would likely require Medicaid-funded nursing home care without some level of support services. The state’s Essential Community Supports program is made available to individuals whose needs do not meet the state’s nursing home level of care benchmark, but who require some assistance to remain in their homes and communities. Based on individual assessments, recipients receive a coordinated set of services, which can include:
- A personal emergency response system;
- Homemaker services;
- Caregiver support and education;
- Home-delivered meals;
- Community living assistance; and
- Adult day services.
The program is part of Minnesota’s strategy to reach people early, provide less expensive services, and prevent or delay an individual’s need to spend down their assets in order to qualify for Medicaid.
Hawaii’s Kapuna Caregiver Program was reauthorized in 2018 and funded through appropriations of up to $1.5 million, or $210 per week per eligible participant. The program provides long-term services and supports, such as adult day care, transportation, chore services, respite care, and related supports to keep working caregivers employed. While not a means-tested program, the state conducts a holistic assessment of the caregiver and care recipient. Allocated dollars are provided directly to service agencies to minimize administrative oversight. Moving forward, state policymakers will continue to review the program’s sustainability. During its first year of implementation, most program funds went to providing adult day care. In the future, state policymakers would like to explore other ways to support family caregivers using these very limited resources.
Mitigating the Financial Burden
Washington State passed the first-in-the-nation Long-Term Care Trust Act mandatory payroll premium housed in a state trust fund finances long-term services and supports for everyone who pays in and is employed in the state. Qualifying individuals become eligible to receive benefits when they need assistance with three or more activities of daily living, which Washington State defines as bathing, bed mobility, dressing, eating, and other similar activities. The state pays certified, licensed long-term services and support providers to deliver care. Qualified family members can also be paid for services through these agencies.
The trust fund covers $36,500 (adjusted with inflation) in long-term care benefits per individual over the course of the beneficiary’s lifetime. Based on the state’s actuarial analysis, Washington policymakers expect this amount will cover most individuals’ long-term needs. Funds may be used for a variety of purposes, including:
- Paying professional aides;
- Training and reimbursing family caregivers; and
- Covering expenses of caregiving support, care coordination, respite, and similar supports.
Maximizing the Flexibility of Home- and Community-Based Services Waivers
Minnesota’s Elderly Waiver Program provides a range of supports for family caregivers, including respite, counseling and training, and the Family Memory Care model that offers coaching and other services to families taking care of an individual with dementia.
Washington’s 1115 waiver program supports a range of benefits designed to support caregivers so that individuals who need care can stay at home and in their communities. Its Medicaid Alternative Care program targets adults who may be eligible for Medicaid but are not currently accessing long-term support services, while its Tailored Supports for Older Adults program creates a new benefit for those at risk of needing Medicaid long-term care services in the future. Both programs offer information, training, and supports for caregivers, including respite options.
Investing in a Supportive Care Workforce
Several state officials highlighted the urgency of developing an adequate workforce to care for older adults, including the need to train and professionalize paid family caregivers. Under Washington’s Long-Term Care Trust Act, a “qualified family caregiver,” or a relative of an eligible care recipient who satisfies state law requirements for providers of long-term services and supports will be eligible to receive payment from the state for providing those services.
Given the central role states play as funders of long-term care, the development of a national strategy to support family caregivers creates opportunities for them, including policy strategies that can be implemented at the state level.
In the coming months, NASHP will be working closely with The John A. Hartford Foundation and the Administration for Community Living to launch the RAISE Family Caregiver Resource and Dissemination Center webpage. The webpage will serve as a national resource for state policymakers and other stakeholders interested in understanding the critical role of family caregivers and identifying policies and best practices to support them.