Vision of a Better Future for People Needing Long-Term Services and Supports

Vision of a Better Future for People Needing Long-Term Services and SupportsJuly 2015The Long-Term Care Financing Collaborative developed a consensus statement describing the challenges with the current long-term supports and services system in the United States and laid out a set of foundational principles for designing a sustainable and affordable system of care. The Collaborative recognizes that financing and delivery of services and supports are inextricably linked. The purpose of this statement is to express our agreement on LTSS recommendations that recognize the role of families and communities in delivering services and supports. Background People of all ages who need help with activities of daily living want to live lives that are as independent and fully engaged as possible. The vast majority will live at home and, when they need assistance, will often turn to their families, neighbors, and other trusted members of their communities.1 Family caregivers are the bedrock of our system for delivering personal assistance and social supports to the frail older adults and younger people with disabilities. They not only provide direct care, but also help their loved ones navigate the complex network of professional health and long-term care services. For the vast majority of care recipients, families are the first line of support. Communities, including neighbors and friends, also provide critical assistance as well as access to services and social engagement.More than eight in ten elders and younger people with disabilities who require some level of personal assistance receive this care at home.2 More than eight in ten of them do so with only the help of family and friends and without any paid assistance.3 Those family caregivers who play such a critical role often do so at great physical, financial, and emotional cost. Long-Term Care Financing Collaborative LTCFC • July 20152As a result, reforms to the nation’s long-term care system must acknowledge and support the role of family caregivers and communities. At the very least, government should remove disincentives to effective family and community supports for people with chronic conditions. However, the Collaborative also believes government should actively recognize and support both family caregiving and a wide variety of grassroots community supports.This is especially important in the face of profound changes in demographics, social and family structure, and the delivery of medical care, all of which are increasing pressure on these caregivers. Specific changes include:• Increasing numbers of people living to advanced old age and living longer with disabilities, trends that may require more years of supports than ever before.• Low fertility rates that result in fewer adult children to care for aging parents.• Growing employment among women--who have traditionally served as primary caregivers.• Profound changes in the nature of families, including high rates of divorce and those who never marry, and increasing numbers of children born to single-parent households.• Accelerated discharges from in-patient facilities that require family members to provide more complex care.• The growing preference for less institutional and more home-based care. The confluence of these trends will make it difficult, if not impossible, for many families to care for their loved ones without additional support. It may, in fact, no longer be possible to rely on the “traditional family” to carry this weight alone. As a result, both professional services and communities may play a critical and much broader role in assisting people who require personal assistance. We anticipate that new models of supports and new forms of communities may develop in coming years. At the same time, federal, state, and local governments will continue to face enormous fiscal pressures that will require them to make the most effective use of available funds.4 LTCFC • July 20153This may result in a fundamental change in the role of government at different levels—from financing and delivering services (directly or indirectly) to also recognizing and enhancing both family caregiving and local community initiatives. We recognize that not all people with functional limitations can or would choose to live their entire lives at home. In some cases, residential care may be more appropriate or preferred as needs increase or family caregiving becomes unavailable or insufficient. However, a robust structure of family and community support can make it possible for people to remain at home for a longer period of time—a situation that can improve their well-being and quality of life and, not incidentally, save the system money. Policy Recommendations For Family Caregiving & Home- And Community-Based Services The Collaborative supports a broad national strategy aimed at supporting family caregiving and encouraging community-based supports for those receiving care and their famil