This page contains resources and information to help you advocate for quality long-term care. Click on the topic areas below to find more information.
Citizen advocacy groups (CAGs) are groups of concerned citizens who work to improve the quality of care for nursing home residents in their locality, state, or region, and many groups have expanded their focus to address quality of care issues across the long-term care continuum. Members of these groups are often people who have had loved ones in long-term care facilities and are concerned about residents of long-term care. The groups share a commitment to improving the quality of care and life for residents who are in need of long-term care. They may be able to inform you about the resources in your state, the quality of care in particular facilities, and the current status of long-term care reform in your state.
Visit the Citizen Advocacy Group Center to learn more and to find a CAG in your state to connect with others who are interested in long-term care reform.
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Home or Nursing Home: America’s Empty Promise to Give the Elderly and Disabled a Choice
There's been a quiet revolution in the way the elderly and young people with disabilities get long-term health care. A new legal right has emerged for people in the Medicaid program to get that care at home, not in a nursing home. States, slowly, have started spending more on this "home- and community-based care." But there are barriers to change: Federal policies are contradictory, and states face record budget deficits. As a result, for many in nursing homes — or trying to avoid entering one — this means the promise to live at home remains an empty promise.
NPR continues to expand their series “Home or Nursing Home: America’s Empty Promise to Give the Elderly and Disabled a Choice” through a recent presentation about home care as a civil right. Access the entire series of articles, statistics (including a map of community-based Medicaid spending by state, an interactive database about the independence level of residents at nearly 16,000 individual nursing homes, etc.) by visiting NPR's website.
Piecing Together Quality Long-Term Care: A Consumer’s Guide to Choices and Advocacy
This consumer guide, developed in March 2011, educates people with disabilities and older adults about their options for long-term services and supports and empowers consumers to be self-advocates for quality long-term care. The guide includes tips from consumers as well as information and resources to assist people currently living in nursing homes to move back into the community. The guide is available in several formats, including a a PDF version and audio portions of the guide; a hardcopy is also available for $20.
Your Discharge Planning Checklist: For patients and their caregivers preparing to leave a hospital, nursing home, or other health care setting
Being discharged from a hospital and going home or moving between other care settings can be stressful for consumers and caregivers. This discharge planning checklist from the Centers for Medicare and Medicaid Services provides consumers and their families with information about these kinds of transitions.
Tips for People Moving from a Nursing Home Back Into the Community
“Nursing home transition” is a term used when people who live in a nursing home return to the community. Most states provide some type of assistance to nursing home residents who wish to move back home or into a new home in the community. This assistance often comes from a state nursing home transition program. This fact sheet provides information on how to move out of a nursing home and the transition process.
Consumers for Quality Care, No Matter Where Presentation
Jessica Brill Ortiz, program manager, and Becka Livesay, program associate – communications and outreach, presented an overview of the Consumers for Quality Care, No Matter Where initiative at the 2011 Aging in America conference in San Francisco. The presentation detailed the Consumer Voice’s work with advocates across the country to empower consumers to be self-advocates for quality care while building a bridge between the aging and disability communities. In keeping with this work, the presentation outlines the steps taken to make the consumer guide easily accessible to persons with disabilities on the Consumer Voice website using low-cost and effective technology. Also highlighted were three citizen advocacy groups’ work to develop and distribute a state-specific guide aimed at educating and empowering older adults and persons with disabilities in need of long-term-care services to make informed decisions and become self-advocates for quality long-term care. The Consumer Voice is in the process of developing a “How To” document to help citizen advocacy groups across the country produce and disseminate their own guides. Access the presentation slides online.
Long-Term Services, Supports and Housing: Choices & Advocacy Conference Call
On March 28, 2012 the Consumer Voice held a conference call titled Long-Term Services, Support and Housing: Choices & Advocacy. The call provided consumers currently receiving or seeking long-term services and supports in their home, their family members, as well as long-term care ombudsmen, other advocates and interested others with an overview of options for long-term services and supports (LTSS) at home and in the community. It also covered housing rights and ways to overcome barriers to obtaining affordable, accessible housing. The call included presentations from: Jessica Brill Ortiz, Program Manager at the National Consumer Voice for Quality Long-Term Care; Robyn Grant, Director of Advocacy and Outreach at the National Consumer Voice for Quality Long-Term Care; Sarah Kaplan, Independent Living and Youth Advocate at the Boston Center for Independent Living; Bonnie Milstein, Director of Housing Policy for the Bazelon Center for Mental Health Law and Co-Chair of the Consortium of Citizens with Disabilities (CCD) Housing Task Force; and Julie Sanchez a Consumer from New Mexico.
A free recording of the conference call is available here. The call materials are available here. A CD of the call recording and printed versions of call handouts are also available for purchase from the Consumer Voice for $5.00, plus shipping and handling. Visit the Consumer Voice Store or call 202.332.2275 for more information or to place an order.
CMS Issues Medicaid HCBS Final Rule
On January 10, 2014 the Centers for Medicare and Medicaid Services (CMS) issued the Medicaid Home and Community-Based Services (HCBS) settings final rule (CMS-2249-P2). The final regulation addresses several sections of Medicaid law under which states may use federal Medicaid funds to pay for HCBS. The rule establishes requirements for the qualities of settings that are eligible for reimbursement for Medicaid HCBS provided under sections 1915(c), 1915(i), and 1915(k).
CMS has released several fact sheets on the final rule, which can be viewed here:
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