Families are the safeguard for their loved ones who cannot protect themselves.

1. Stay involved in your loved one's care.  Whether care occurs in a facility or in your loved one’s home, visit often.  Learn the plan of care, and make sure it meets your loved one’s needs.  Provide information to staff that will help the plan of care to be complete and meaningful, and assure that it is included, in writing, in the plan of care.  Communicate regularly with your loved one’s social worker/care team leader.

2. Observe your surroundings in the care setting: your loved one, the home/building, the staff, and if in a facility, other residents.  Note anything good; let the staff know.  Note anything that seems “off”.  Look for “trends” – more than one occurrence of something. Write everything down in detail.  Include date, time, identifying information, description of events & observations. Keep this documentation organized for future reference.

3. Ask questions of the staff, and work with them if you see anything that needs attention, even if it is not a trend.  If not addressed, it could become one.

4. Become familiar with the provider’s policies and federal/state regulations that apply so that you know what should be happening.  Identify specific problems or violations and talk with management staff. 

Ideally, these steps should resolve your concerns. If not, here are the next steps:

5. Approach the provider’s administration, and then the corporate leadership if violations or problems persist.  Cite the policies and regulations that are in violation; give examples of your observations and efforts to work with staff to correct them.  Refer to your notes so you will be thorough and accurate when you approach these officials.

6. If these efforts fail, the state regulatory agency has a complaint reporting process.  They will need the information you have in writing and will refer you to the agency staff who takes reports of complaints or violations.

7. The regulatory agency will determine whether investigation is warranted.  Follow up with that agency after they have completed an investigation, to learn what they found and what to expect the provider to do in response.

Other approaches in addition to, instead of, or alongside the above:

8. Many providers have Family Councils, organized to provide families with a voice and a venue to discuss, learn, and interact with the administration on behalf of all consumers and their families.  Often these Councils also occasionally conduct special activities for consumers.  You may want to become involved with the Family Council if your loved one’s provider has such a group.  If not, you may want to advocate for the establishment of a Family Council.

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9.  Each state has a Long-Term Care Ombudsman program to assist consumers in advocating to resolve individual quality of care issues.  You can find your state’s Ombudsman HERE.  These programs vary in structure and scope, so ask: “Are you independent, or are you a part of a governmental agency?” and “Do you take cases in (assisted living/in-home care/day services, etc.)?”  Some states serve only nursing facilities, while others serve any setting.  If the program falls under a governmental agency, and the facility in question is government-affiliated in any way (funding, ownership, etc.), you will need to be alert for any potential conflict of interest.

The National Consumer Voice for Quality Long-Term Care – THE premier national organization with the mission to advocate for quality care for all long-term care consumers throughout the country, this nonprofit, established in 1975 as the National Citizens Coalition for Nursing Home Reform, initiated and spearheaded the passage and implementation of the 1987 Nursing Home Reform Law, often called OBRA 87. They continue to lead the way for change in national policy, regulation, and legislation, while educating advocates who work on local, state, and federal levels.

Center for Medicare Advocacy – The Center for Medicare Advocacy works to advance access to comprehensive Medicare coverage, health equity, and quality health care for older people and people with disabilities by providing exceptional legal analysis, education, and advocacy. This national nonprofit, established in 1986, is staffed with attorneys, advocates, nurses, and technical experts who empower consumers on Medicare to advocate for Medicare to fund the medical care they need. 

Long-Term Care Community Coalition– The Long Term Care Community Coalition (LTCCC) is a nonprofit organization dedicated to improving quality of care, quality of life, and dignity for elderly and disabled people in nursing homes, assisted living, and other residential settings.

LTCCC focuses on systemic advocacy, researching national and state policies, laws, and regulations to identify relevant issues; develop meaningful recommendations to improve quality, efficiency, and accountability; and educate policymakers, consumers, and the general public. 

Justice In Aging – Since 1972, this national organization uses the power of law to fight senior poverty by securing access to affordable health care, economic security, and the courts for older adults with limited resources; providing the opportunity to live with dignity, regardless of financial circumstances, free from the worry, harm, and injustice caused by lack of health care, food, or a safe place to sleep; using the law to strengthen the social safety net and remove the barriers low-income seniors face in trying to access the services they need. 

The National Consumer Voice advocacy toolkit offers a wealth of information and tips on how to be an effective advocate, both for individual care of a loved one in a facility, and for systems change on a state or national level. 

  A daughter who is also a filmmaker has created a docuseries, “No Country for Old People”, detailing her struggles to secure care for her mother in a nursing home in California. The 3-part film serves as both an eye-opener and a call to action to “R.O.A.R. 4 LTC” with other advocates across the country. The film is available on Amazon Prime Video through the hyperlink above.