Issues: Caregiving - Public Policy Institute

Long-Term Services and Supports and Family Caregiving

The AARP Public Policy Institute (PPI) recognizes that family caregivers are an essential part of the social, health, and economic fabric of the United States—providing an economic value of $470 billion in unpaid contributions. Read on to learn about the work PPI is doing to support family caregivers.

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The Home Alone AllianceSM is a partnership of public, private, and nonprofit sector organizations coming together to change the way health care organizations and professionals interface with family caregivers.

AARP fought for public reporting of nursing home COVID-19 cases and deaths. Using this data, the AARP Public Policy Institute, in collaboration with the Scripps Gerontology Center at Miami University in Ohio, created the AARP Nursing Home COVID-19 Dashboard.

AARP Public Policy Institute has launched LTSS Choices—a multifaceted project with an overarching mission to catalyze the transformation and modernization of the nation’s long-term care system into one that meets the dynamic needs and preferences of consumers and their families.

Recent Analysis

High-Performance Revisited Examining Long-Term Services and Supports System Performance

Each edition of the Long-Term Services and Supports (LTSS) State Scorecard has measured and ranked LTSS systems in every state against an objective, data-driven set of metrics, or indicators. In advance of the forthcoming 2023 edition, a new paper discusses our approach and reflects on what has changed since the Scorecard was first published.

LTSS Choices From Ideation to Standard Practice Scaling Innovations in Long-Term Services and Supports

Five promising innovations currently in the long-term services and supports (LTSS) system are becoming more commonplace. This paper discusses these innovative programs and the diffusion of innovation, or scaling-up process, underlying them.

LTSS Choices Increasing Independent Living Choices through Coordinating Affordable Housing and Medicaid Housing as an Indicator in the 2020 Long-Term Services and Supports State Scorecard

This paper highlights how three states have addressed concerns about housing and services for Medicaid and state-funded LTSS beneficiaries by linking affordable housing properties with LTSS and other supportive services.

LTSS Choices Coordinating Housing Health and LTSS Through Home-Based Care Management

This report describes and evaluates the SASH (Support and Services at Home) program in Vermont as one model of HBCM programs. Founded in 2009, SASH now partners with 70 organizations, including hospitals, community-based organizations, and academic institutions in sites across the state.

Family Caregiver Considerations for the Future of Hospital at Home Programs br

The declaration of the COVID-19 public health emergency (PHE) accelerated an already burgeoning movement of health care into the home. An increasing number of health care systems are choosing to invest in homebased care in new and innovative ways, and consumers are using these services at unprecedented levels. The Hospital at Home (HaH) model shifts care into the home setting and delivers acute hospital-level care to eligible patients where they live instead of in a hospital.

LTSS Choices Empowered Direct Care Worker Lessons from the Green House Staffing Model

This paper describes the most widely researched model in the small-house nursing homes category: THE GREEN HOUSE. Authors discuss how the Green House staffing model improves the quality of work life for staff and promotes positive outcomes for residents and whether any of these tactics can be adopted by nursing homes that are not yet able to change their housing structures.

LTSS Choices International Review of Experts Recommendations for Reforming the Long-Term Services and Supports Workforce

This report describes the LTSS workforce in the Organisation for Economic Cooperation and Development (OECD), of which the United States is a member country. It reviews the challenges LTSS workers face, summarizes experts’ recommendations for reform, and offers examples from some OECD countries that are innovating to improve the situation for their LTSS workforce.

LTSS Choices Promoting Choices through Restorative Services International Innovations br

This report highlights a multidisciplinary intervention that strengthens a person’s ability to function called restorative services (sometimes called reablement or restorative care). It explores the evidence of the impact of restorative services and reviews roughly 20 years of evidence related to the efficacy of these services by summarizing international and country-specific studies. It concludes with recommendations for policy makers.

LTSS Choices The Role of Medicaid Managed Long-Term Services and Supports during the COVID-19 Pandemic br

This report examines the role played by Medicaid managed care organizations (MCOs) delivering Medicaid managed long-term services and supports (MLTSS) during the pandemic, including some of the “on-the-ground” experiences of MCOs and other stakeholders as the crisis unfolded. We explore the challenges states and MCOs faced, efforts to meet the needs of recipients of MLTSS, and lessons learned.

LTSS Choices International Review of Innovations to Protect Nursing Home Residents from Infectious Diseases such as COVID-19 br

This report reviews the international community’s experience with the COVID-19 pandemic in nursing homes, focusing on the experiences of some countries that have had relatively few deaths in their residential care facilities: how they prepare for pandemics in general, how they responded to the pandemic and how their long-term care infrastructure improved outcomes. It also covers international experts’ recommendations for improving how nursing homes and assisted living facilities respond to infectious disease.

LTSS Choices Presumptive Eligibility for Medicaid Home and Community-Based Services Can Expand Consumer Choice

This report explores how presumptive eligibility can empower consumers to access publicly funded home- and community-based services (HCBS) without lengthy determination delays.

LTSS Choices Paying Family Caregivers to Provide Care during the Pandemic-and Beyond

Medicaid is the primary funder of long-term services and supports (LTSS) in the United States. It provides those services and supports either through institutional care (i.e., nursing home care) or home- and community-based services (HCBS). This report explains that one cost-effective HCBS option with multiple advantages is to pay family members to provide care for older people and adults with physical disabilities.

Caring Locally for Caregivers How State and Local Laws Protect Family Caregivers from Discrimination br

Workplace discrimination against employees who care for adult family members, called Family Responsibilities Discrimination (FRD) or caregiver discrimination, is an escalating problem that can disadvantage employees and put employers at legal risk. This report details the ways in which state and local laws fill in the gaps left by federal law by prohibiting employment discrimination that occurs because of family caregiving.

Managing a Paid Job and Family Caregiving is a Growing Reality br

The 2020 Caregiving in the U.S. report revealed an increase of more than 5 million employed family caregivers since 2015. This report takes a deeper look into the Caregiving in the US data at the nearly 30 million Americans who are caring for an ill friend or family member while also working at a paying job. It highlights the impacts and challenges of managing both responsibilities, and it identifies what’s changed since 2015.

Caregiving in the United States 2020 br

Just released by The National Alliance for Caregiving (NAC) and AARP: Caregiving in the U.S. 2020. This 2020 update reveals an increase in the number of family caregivers in the United States of 9.5 million from 2015 to 2020. Family caregivers now encompass more than one in five Americans. The study also reveals that family caregivers are in worse health compared to five years ago. As the demand for caregiving rises with an aging population, there is an opportunity for the public and private sectors to work together to develop solutions to support family caregivers and those under their care.

Recognition of Family Caregivers in Managed Long-Term Services and Supports br

Based on a study of managed long-term services and supports (MLTSS) programs, this report examines provisions in MLTSS contracts that are important for the support of family caregivers. The study comprised the review of 31 MLTSS programs for older adults and adults with physical disabilities in 23 states in 2019.

Fast-tracking Approval for Publicly Funded LTSS Presumptive Eligibility br

Part of the Long-Term Services & Supports State Scorecard Promising Practices, this paper examines Presumptive Eligibility programs in five states -- Michigan, Ohio, Rhode Island, Vermont, and Washington – comparing key features and making recommendations for effective programs that increase access to Long-Term Services and Supports.

Valuing the Invaluable 2019 Update Charting a Path Forward br

Part of a series of papers on the economic value of family caregiving, this report updates national and individual state estimates of the economic value of family caregiving using the most current data available. In 2017, about 41 million family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $470 billion.

Long-Term Services and Supports br

In 2018, about 14 million adults of all ages needed long-term services and supports (LTSS). This fact sheet takes a closer look at what LTSS encompass, who needs these services, who provides care and where it’s provided, what paid LTSS cost, and who pays for LTSS.

Emerging Innovations Mobility Managers br

Mobility managers are transportation coordinators for older adults, people with disabilities, veterans, and other members of the riding public. This paper highlights who mobility managers are and what they do—and why they are important now and in the future. It highlights emerging innovations from five case studies.

Home- and Community-Based Services Beyond Medicaid How State-Funded Programs Help Low-Income Adults with Care Needs Live at Home

This paper highlights how state-funded home- and community-based services programs in 9 states are supporting low-income older adults and/or people with physical disabilities and their family caregivers to live with maximum independence at home. The paper also features a state’s emerging innovation to provide tailored services and supports for “near poor” older adults and their family caregivers.

Older Americans Act

Older Americans Act funding is failing to keep up with inflation and America’s growing older population. Funding supports critical services including meals to help millions of older Americans age in place.

Breaking New Ground Supporting Employed Family Caregivers with Workplace Leave Policies

Trends suggest that in the coming years an increasing share of family caregivers will be in the labor force, facing the dual demands of employment and caregiving responsibilities for aging relatives.

Across the States 2018 Profiles of Long-Term Services and Supports

Across the States 2018 Profiles of Long-Term Services and Supports is the 10th edition of the AARP Public Policy Institute’s state long-term services and supports (LTSS) reference report.

Disrupting the Marketplace The State of Private Long-Term Care Insurance 2018 Update br

The long-term care insurance (LTCI) industry is undergoing a transformation and is responding to consumer concerns about the high cost and complexity of LTCI by developing alternative products that are more affordable and flexible to meet the coverage needs consumers. This report includes facts and figures on LTCI and information on the emerging market for short-term care products.

Millennials The Emerging Generation of Family Caregivers br

Millennials comprise about 1 in 4 family caregivers, and are the most diverse caregiving generation. This report is the first to look comprehensively at Millennials in the caregiving context. . Podcast: Millennial Caregivers , host Marie-Pierre spoke to Wendy Fox-Grage, Senior Policy Advisor with AARP’s Public Policy Institute, and Isabel Longoria from the AARP Houston office. Both share their insights and favorite resources as a millennial caregiver.

Taking It to the Next Level Using Innovative Strategies to Expand Options for Self-Direction

Evidence shows that self-direction is an effective way to provide long-term services and supports (LTSS). Part of a series of innovative and promising practices reports to the LTSS State Scorecard, this paper describes how four states used innovative strategies to develop and expand self-directed services programs, coordinate and personalize service options, promote stakeholder engagement and outreach, and implement training programs to expand opportunities for individuals to self-direct their LTSS.

Giving States A Tool To Improve Long-Term Services and Supports

AARP’s Long-Term Services and Supports (LTSS) State Scorecard aims to pick up the pace of improving LTSS by providing comparable state data to benchmark performance, measure progress, identify areas for improvement, and improve lives.

No Wrong Door Supporting Community Living for Veterans

This paper describes promising practices on how aging and disability agencies, Veterans Affairs Medical Centers, and Veteran Benefits Offices have forged partnerships to better support Veterans in community living.

Emerging Innovations in Managed Long-Term Services and Supports for Family Caregivers

This emerging innovations paper highlights examples of how progressive managed care plans are supporting family caregivers who are caring for plan members with long-term services and supports needs. This paper is the first ever to provide insights directly from managed care leaders about family caregiver supports.

Patient and Family Advisory Councils in Hospitals Building Partnerships to Improve Care

This Spotlight describes the history and emergence of patient and family advisory councils (PFACs) in hospitals, and highlights how hospitals are engaging patients and families in PFACs and what engagement activities are being adopted. It also recommends how PFACs can be broadened to include the unique perspectives of family caregivers of older adults into quality improvement activities.

Long-Term Services and Supports Scorecard Promising Practices Paper State Strategies to Reduce the Risk of Long-Term Nursing Home Care

After Hospitalization describes strategies used in four highly ranked or significantly improved states—including Minnesota—to reduce the risk of long-term nursing home care after a hospitalization. The paper also includes a toolkit of resources that can help others learn more and potentially replicate these practices, as well as contact information for experts.

From Research to Standard Practice Advancing Proven Programs to Support Family Caregivers of Persons Living with Dementia

Caregiver support services can make a real difference in the daily lives of people with dementia and their family caregivers. This paper examines what is known about effective programs to support family caregivers, with a focus on evidence-based programs for family caregivers of persons living with dementia.

Stretching the Medicaid Dollar Home and Community-Based Services Are a Cost-Effective Approach to Providing Long-Term Services and Supports

Redirecting more resources to provide Medicaid-funded home and community-based services (HCBS) instead of nursing facility services is cost-effective compared with nursing facilities. In addition, HCBS are more responsive to the preferences of older adults and people with disabilities to remain in their homes and communities, and have the potential to improve the quality of life of people receiving these critical services.

No Wrong Door Person- and Family-Centered Practices in Long-Term Services and Supports

The paper provides concrete examples of how seven No Wrong Door Systems—sometimes called Aging and Disability Resource Centers—are promoting person- and family-centered practice.

Medicaid A Program of Last Resort for People Who Need Long-Term Services and Supports

Medicaid is a lifeline for millions of children and adults with disabilities and older people who depend on the program for health care and assistance with long-term services and supports (LTSS) such as toileting, bathing, and dressing. Medicaid is the nation’s largest publicly funded health and LTSS insurance program for people with low incomes.

Long-Term Support and Services Fact Sheet

This fact sheet looks at what LTSS encompasses, who provides that care, and lastly who are the major payers.

Family Caregivers & Managed Long-Term Services and Supports

This is the first major research paper in this emerging field of managed long-term services and supports (LTSS) that addresses family caregivers’ needs. Family caregivers of people with self-care needs often make it possible for the members of managed care plans to live at home rather than in institutions.

Susan Reinhard is senior vice president and director of AARP Public Policy Institute. Read her latest blogs on family caregiving, healthy living, nursing and more.

This scorecard ranks each state on its ability to provide long-term services and supports for older adults, people with disabilities and family caregivers, with the goal of improving service delivery and lives.

Family Caregiver Video Guide to Managing Medications

Caregiving instructional videos aimed at preparing family caregivers perform a variety of medical/nursing tasks such as managing medications, giving injections, mobility, wound care and preparing special diets.

The Dual Pressures of Family Caregiving and Employment

Using data from the Caregiving in the U.S. 2015 survey, this Spotlight highlights current information about the impacts of the dual responsibilities of employment and family caregiving.

Valuing the Invaluable 2015 Update Undeniable Progress but Big Gaps Remain

Part of the Valuing the Invaluable series on the economic value of family caregiving, this report updates national and individual state estimates of the economic value of family caregiving using the most current data available. In 2013, about 40 million family caregivers in the U.S. provided an estimated 37 billion hours of care to an adult with limitations in daily activities.

How Managed Long-Term Services and Supports is Providing Coordination

Older people and adults with disabilities, particularly those with care needs, can benefit from care coordination. Care coordinators are typically nurses or social workers who can help with tasks such as monitoring chronic health conditions, connecting them to social supports, conducting assessments, and writing plans of care.

State Long-Term Services and Supports Scorecard How One State Improved

This report presents the findings from a case study of Connecticut. The study was conducted following the release of the 2014 State Long-Term Services and Supports Scorecard to understand factors that lead to improved performance on measures of long-term services and supports (LTSS) for older adults and people with physical disabilities.

Effective Transitions Between Care Settings

Unnecessary and avoidable care transitions can result in adverse outcomes, especially among older adults and people with multiple chronic conditions.

State Long-Term Services and Supports Scorecard How One State Improved

This report presents the findings from a case study of Mississippi. The study was conducted following the release of the 2014 State Long-Term Services and Supports Scorecard to understand factors that lead to improved performance on measures of long-term services and supports (LTSS) for older adults and people with physical disabilities.
Access to Unemployment Insurance Benefits for Family Caregivers While a growing number of states have unemployment insurance (UI) rules in place to accommodate workers who must leave their jobs to care for family members who are ill or have a disability, significant barriers remain for caregivers seeking UI benefits.

Expanding Specialized Transportation New Opportunities under the Affordable Care Act

The Affordable Care Act (ACA) provides new but limited opportunities to promote or fund specialized transportation services for older people and adults with disabilities.

Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions

Providing care to people with cognitive or behavioral health conditions is doubly challenging. This report highlights results from a national survey of caregivers.

Raising Expectations 2014 A State Scorecard on Long-Term Services and Supports for Older Adults People with Physical Disabilities and Family Caregivers

While states are making measureable progress in improving long term services and supports (LTSS), widespread disparities still exist across the country, with even top performing states requiring improvement. Further, the pace of change remains slow, threatening states’ ability to meet the needs of the aging population. How does your state rank?

Transforming the Workforce to Provide Better Chronic Care The Role of Nurse Care Managers

This series explores the evolution of primary care systems to better meet the needs of consumers with complex health conditions. It demonstrates that changes in the workforce are required to empower consumers to better manager their health.

Employed Family Caregivers Providing Complex Chronic Care

Policies to support employed family caregivers who provide chronic care can benefit both employers and caregivers.

Family Caregivers Providing Complex Chronic Care to Their Spouses

A new survey shows 1 in 5 family caregivers is a spouse. Efforts to reduce isolation and stress are needed to support spouses and their partners.

The Aging of the Boomers and the Growing Care Gap a Look at Future Declines in the Availability of Family Caregivers

Family members provide the majority of long-term services and supports, but the supply of family caregivers is unlikely to keep pace with demand as the care gap widens.

At the Crossroads Providing Long-Term Services and Supports at a Time of High Demand and Fiscal Constraint

Tight fiscal budgets and increasing demand for publicly funded long-term services and supports (LTSS) are putting pressure on states to transform their systems of care for older people and adults with disabilities. Many states are beginning to implement Affordable Care Act LTSS options that increase access to Medicaid home and community-based services, but non-Medicaid aging and disability funding has either decreased or remained flat in most states. What is your state doing?

Consumer Choices and Continuity of Care in Managed Long-Term Services and Supports Emerging Practices and Lessons

Increasing numbers of states are transitioning their Medicaid long-term services and supports (LTSS) systems from fee-for-service models to managed care models, raising concerns among stakeholders that services will be disrupted and consumer choices diminished. See the findings.

Listening to Family Caregivers the Need to Include Family Caregiver Assessment in Medicaid Home- and Community-Based Service Waiver Programs

Family caregiver assessment is critical for effective delivery of home- and community-based services, but the concept is not well understood in policy or practice.

Keeping Up With the Times Supporting Family Caregivers With Workplace Leave Policies

Employment policies such as unpaid family leave, paid family leave and earned sick time can lessen the burden on working caregivers and reduce worker turnover.

Home Alone Family Caregivers Providing Complex Chronic Care

The role of many family caregivers has dramatically expanded to include performing medical/nursing tasks once provided only in hospitals.

ReACT Employer Resource Guide

Four steps for supporting employees with caregiving responsibilities.

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