A Framework for State Solutions

Download and read the full paper here [PDF]

Executive Summary

With Millennials becoming parents and Baby Boomers getting older, the need for care across all generations of our families is growing. Many people can no longer rely on just family to provide the care they need. One of the most important steps we can take - and must take - in creating a family-centered caregiving system built for the 21st century is to address, head-on, the question of how we better provide long-term services and supports (LTSS) for our aging population and people with disabilities. Supporting care at any age and every stage of life will mean that we must invest now in eldercare, childcare, and paid leave for all. This paper reflects Caring Across Generations’ recommendations for the first of these critical components of a new, inclusive, interdependent vision for Universal Family Care.

Overview: The Rising Need for Home Care in America Today

Every eight seconds, a person turns 65 in America. That’s 10,000 people every day. The demand for long-term services and supports (LTSS) is expected to surge over the next decade. As it stands, seven out of 10 of us will need LTSS at some point in our lives due to disability or the simple process of getting older. While institutional care may be the right choice in some cases, over 90 percent of Americans prefer to receive care in their homes and communities for as long as possible rather than in nursing homes or assisted living facilities. And yet the systems and policies we have in place fail to reflect this overwhelming desire and the changing nature of families today.

With the Baby Boomer generation (our nation’s largest) reaching retirement age, and medical advances allowing people to live longer than ever before, there has never been a greater opportunity or sense of urgency to reimagine how we care for one another during our latter stages of life.

Current LTSS programs, both public and private, are unable to meet the needs of our growing and rapidly aging population. Some people erroneously believe that their private insurance will cover home care, leading to large gaps in insurance coverage and care planning. Private long-term care insurance costs are also getting so high that most people are not signing up for these plans. For those that do, they often find out too late that their insurance does not offer robust benefits.

Most Americans also misunderstand what Medicaid and Medicare actually covers when LTSS needs arise. Medicaid, under strict eligibility measures, does offer key long-term care benefits, such as doctor’s visits, nursing home care and care services at home. To be eligible for programs through Medicaid though, consumers often need to spend their assets down to poverty levels. Coverage through Medicare is notably short-term and not comprehensive. While Medicare may cover home health care services after a medical incident, the federal program does not cover longer-term home and community-based services and supports.

Amidst inadequate long-term care insurance and misinformation around Medicaid and Medicare, the demand for LTSS is increasing and families are unable to afford the care they need. Additionally, a historical failure to professionalize the care workforce has resulted in an inadequate retention of workers to meet the rising demand for care. Many families now face the unexpected expenses of having to care for and/or support themselves or a loved one needing quality LTSS.

Designing a New Care Solution

In late 2015, Caring Across Generations convened policy experts, academics and advocacy groups representing care workers and care recipients from across the country to consider a question: “If we were building the care system we want and need reflecting the realities of families today, would we be satisfied with what we have now and work to improve it - or would we build something new?”

In answering the question, an idea emerged: a policy proposal for a statewide LTSS benefit that would take full advantage of state authority to provide universal LTSS coverage. Universal coverage would mean that any individual or family regardless of income could access the benefit, and that correspondingly, all individuals and families would share the responsibility of costs without overburdening those who cannot afford the care they need. There was resounding consensus that the benefit must work for individuals needing care and the family caregivers assisting with their care while providing dignified jobs with fair wages for care workers.

Participants organized into two work groups, researching either design components for a statewide insurance program or the necessary financing mechanisms to support it. The main goal for both groups was simple: expand, as broadly as possible, access to affordable home care within existing state authority. Under this charge, the work groups set forth to develop recommendations that:

  • Empower individuals and families to remain in their own homes for as long as possible
  • Supplement, support, and sustain care provided by family and friends
  • Set minimum standards for a statewide universal benefit, with a focus on the needs of individuals who often don’t qualify for Medicaid and/or Medicare
  • Address affordability by considering different financing measures and shared responsibility
  • Build and support the workforce needed to meet the increasing demand for home care

This resulting white paper:

  • Outlines the gaps in coverage and lack of sufficient care resources for older Americans, people with disabilities, the family members that support them, and the care workforce
  • Proposes a bold new public statewide long-term care program that provides support to individuals and families, offers protection from the risks and costs of long-term care, and increases access to desired home and community-based services in lieu of a national program or reform at the federal level
  • Identifies opportunities that states should consider to finance a new statewide long-term care program

Download and read the full paper here [PDF]

Acknowledgments

This Caring Across Generations report was written by Josephine Kalipeni, Director of Policy and Partners.

Lead Author: Josephine Kalipeni
Key Contributors: Henry Claypool, Haeyoung Yoon of NELP, Josh Hoxie of Institute for Policy Studies, and Nancy Hooyman of the Gerontology University of Washington School of Social Work
Senior Editors: Janet Kim and Kathleen Duffy

Caring Across Generations would like to thank the following individuals and organizations who participated in the work groups, consulted on this paper, or offered input, support, and contributed in other ways. Though the advice, support, and resources offered by many is invaluable and helped inform our conclusions, the findings and recommendations are those of Caring Across Generations.

  • Alexandra Bradley, National Academy of Social Insurance
  • Anne Montgomery, Altarum Institute
  • Anne Tumlinson, Daughterhood
  • Benjamin W. Veghte, National Academy of Social Insurance
  • Chirag Mehta, Centers for Community Change
  • Elly Kugler, National Domestic Workers Alliance
  • Erin Johansson, Jobs With Justice Education Fund
  • Henry Claypool
  • Home Care Foundation and Central TX Care Coalition
  • Institute for Policy Studies
  • Jews for Racial & Economic Justice
  • Joelle Gamble, The Roosevelt Institute
  • Judith Stein, Center for Medicare Advocacy
  • Judy Feder, Georgetown
  • Justice In Aging
  • Laura J. Wernick, Fordham University, Graduate School of Social Service
  • Lawrence H Nitz, Ph.D., The University of Hawai’i at Mahona
  • Michigan United
  • Nancy Hooyman, Ph.D., Gerontology University of Washington School of Social Work
  • Paraprofessional Healthcare Institute