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Improving Long-Term Care: A Toolkit for Citizen Advocates

This toolkit is designed to support the efforts of long-term care citizen advocacy groups. It offers advice on creating and maintaining an advocacy group, fundraising, using technology effectively, and the role of advocacy groups in moving nursing homes toward resident-centered care.

The Issue: The National Citizens' Coalition for Nursing Home Reform (NCCNHR) was formed to address public concerns about nursing home conditions and substandard nursing home care in the United States. The coalition is comprised of citizen advocacy groups (CAGs), defined in this context as groups of concerned individuals who work together for change in long-term care. CAGs can be large or small, formal or informal.

According to a 2005 NCCNHR survey, these groups are mainly started by individuals who are troubled by the care received by a relative or friend in a long-term care setting. In the survey, many members of the CAGs expressed feelings of frustration and burnout, as well as a need for information and support to ensure their long-term survival and continued success.

Target Audience: Citizen advocacy groups (CAGs), ombudsmen, caregiver support organizations, state policymakers, nursing home providers

The Intervention: NCCNHR developed a toolkit, "Organizing to Improve Long-Term Care in Your State & Community: A NCCNHR Toolkit for Citizen Advocates," to support CAGs in their daily long-term care advocacy work. The toolkit is divided into four sections:

  • Basic Elements for Creating a Lasting Citizen Advocacy Group (CAG)
  • Fundraising: Strategies for Raising Funds for Your CAG
  • Technology: Using Computer Resources to Maximize Your CAG's Potential
  • Culture Change: CAGs and the Culture Change Movement

"Chapter 1: Basic Elements" is an organizational tool for any group of people considering starting a CAG or seeking to expand or further develop their existing group. It covers elements such as mission statements, group structure, and incorporation, as well as establishing a board of directors, creating bylaws, and forming a base membership.

"Chapter 2: Fundraising" provides CAGs with strategies for identifying funding sources, grant writing, and the basics of online fundraising. It uses resources developed by CAGs as models for successful development and links to Web sites of organizations that provide technical assistance to other nonprofits.

"Chapter 3: Technology" is designed to direct both new and older groups to resources to help them develop their capacity to use new technologies. It offers information on raising money for technology investments and identifying the group's potential technological needs, such as listservs and online donation capabilities. It also gives examples of best practices, such as the Long Term Care Community Coalition, which reports New York State actions against nursing homes on its Web site; the Coalition for Institutionalized Aged and Disabled, which partners with a team of long-term care residents who use video cameras to communicate; and The Center for Advocacy for the Rights and Interests of the Elderly (CARIE) of Philadelphia, which offers English-to-Spanish translation services on its Web site.

"Chapter 4: Culture Change" provides information about the "culture change" movement and gives examples of CAG involvement in culture change projects nationwide. The culture change movement seeks to empower long-term care staff and residents and replace traditional nursing home settings with homelike environments.

Each section includes links to helpful organizations and online resources.

The toolkit is available free on the NCCNHR Web site in HTML and PDF formats. Individuals and groups are encouraged to disseminate the information to others.

For Further Information: To download the toolkit or related resources, visit Contact: Janet Wells, NCCNHR Office, 1828 L Street, NW, Suite 801, Washington, DC 20036. Phone: 202-332-2275; Fax: 202-332-2949 January 2007

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