Assisted Living: Additional Resources

The Resident Advocate Newsletter

The Resident Advocate is a quarterly newsletter for residents of long-term care facilities. It provides information on residents' rights and care issues, news and updates on national policy, and self-advocacy tips for obtaining person-centered, quality care. The newsletter is a great resource for residents and families, and can also be shared among friends, facility staff, ombudsmen, and others.

Ombudsman Program Developed Materials:

Assisted Living Consumer Expectations Checklist, developed by the Washington State LTC Ombudsman Program. This checklist is designed to help prospective assisted living residents and their families assess and evaluate facilities. It is meant to be a guide to some of the most important issues, but not to be an exclusive list of all issues.

White Paper on Assisted Living, This paper published by the Office of the DC Long-Term Care Ombudsman Program in 2007 is an educational piece intended to serve as a guide to selecting a suitable Assisted Living Residence (ALR). To that end, Part I provides a summary of the Long-Term Care Ombudsman Program (Ombudsman Program) and how the Ombudsman Program is available to advocate for the rights of the long-term care residents. Part II provides an overview of the services presently available to DC seniors and will further discuss what to look for and questions to ask before moving into an assisted living facility. Part III concludes that, although there are no current regulations governing ALRs in the District, the District can become a national leader in protecting the rights and well-being of assisted living residents through consumer education and enforcement and licensing regulations.

Reports/Resources:

Assisted Living: All the Right Questions, a 2009 Washingtonian magazine article about what to know and what to ask when choosing an assisted-living facility

Assisted Living Consumer Alliance (ALCA) is a national collaboration of groups and individuals working together to promote consumer safety, choice, and rights in assisted living. ALCA provides information for both consumers and advocates, and works collaboratively with government officials and health care professionals to improve assisted living. ALCA supports an improved quality of care, along with greater focus on consumers’ needs and preferences.  Standards must be strengthened and enforced.

Assisted Living Disclosure Form (Updated March 2011) - This form was created by Jim Gump and his family after his mother, Mildred Hadley, died due to neglect from an adult foster care facility. The Gump family wanted something positive to result from her death. They felt that families who are faced with the difficult decision about selecting a safe and secure facility for a loved one could benefit from a form, which would be a guideline or a simple checklist, to help them in their search to select the best facility possible. The form became known as the Assisted Living Disclosure Form, and the Gump family asked the Michigan Campaign for Quality Care (MCQC) to help them. MCQC not only helped but also revised the form including key areas of staffing, training and safeguards such as alarms, smoke detectors, sprinkler systems and quality of life. MCQC championed the use of the form and has helped to circulate it in Michigan. The Gump family is grateful to MCQC members for their hard work and dedication and would like to share the form with other families and agencies across the nation and contacted several groups.

The Assisted Living Federation of America (ALFA) is the only professional association exclusively dedicated to companies operating professionally managed assisted living communities for seniors.  With more than 500 large and small company members nationwide, the Assisted Living Federation of America serves as the voice of senior living, continually "raises the bar" for operational excellence, and advocates on behalf of our members and the seniors the serve.

Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities - This free, online 21-page booklet, produced by the Alzheimer’s Association-Greater Illinois Chapter, provides information to families and staff of long-term care facilities about Alzheimer’s disease and other dementias, particularly care issues related to the late and final stages. For families, this guide offers information on informed choices about a variety of medical decisions they may face on behalf of loved ones with dementia living in nursing homes, assisted living facilities, and other types of care settings. It is also intended to equip families with questions to ask about obtaining quality care for their loved ones, including a checklist of comfort care measures to be discussed with staff members of care facilities. For staff, the guide will serve as a tool to help educate families and assist them in care planning. Individuals and organizations are encouraged to disseminate this booklet in electronic and print formats.

National Center for Assisted Living (NCAL) is the assisted living voice of the American Health Care Association (AHCA). NCAL is dedicated to serving the needs of the assisted living community  through national advocacy, education, networking, professional development, and quality initiatives.  In addition to national advocacy, NCAL supports state-specific advocacy effort through its national federation of state affiliates.

Piecing Together Quality Long-Term Care: A Consumer’s Guide to Choices and Advocacy
This consumer guide, developed in March 2011 by the Consumer Voice, 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 an HTML version, a PDF version and audio portions of the guide; a hardcopy is also available for $20.

Policy Principles for Assisted Living, 2003, a report resulting from the Assisted Living Workgroup. Signed by the Consumer Voice (formerly the National Citizens’ Coalition for Nursing Home Reform), the National Association of State Ombudsman Programs (NASOP), and the National Association of Local Long-Term Care Ombudsman Programs (NALLTCO), this document outlines problems and proposed solutions that will guarantee a reasonable level of quality for residents of assisted living facilities.

Residential Care and Assisted Living: State Oversight Practices and State Information Available to Consumers, 2007 update, prepared for the Agency for Health care Quality and Research

Thinking of Moving to an Assisted Living Residence? Fostering Autonomy & Independence, 2003, developed by the Long-term Care Community Coalition (formerly the Nursing Home Community Coalition of New York State). This guidebook to help people choose an assisted living residence with a special focus on finding a residence that promotes choice and independence.

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.

Consumer Voice 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.

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