Every long-term care situation is different, so arm yourself with knowledge come what may
By Kathy Bradley
Long-term care is a partnership between consumer, provider and advocate. Advocates often struggle to address the inevitable issues that arise in the care of a loved one. These 9 steps offer effective strategies.
Stay involved. 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. Communicate regularly with your loved one’s social worker or care team leader.- Observe your surroundings in the care setting: your loved one, the home/building, the staff and, if in a facility, other residents. Note both the good and anything that seems off, and let the staff know. Look for trends — more than one occurrence of something. Write everything down in detail.
- Ask the staff questions. Work with them if you see anything that needs attention, even if it is not a trend. If not addressed, it could become one.
- Become familiar with the provider’s policies and applicable state and federal regulations so that you know what should be happening. Identify specific problems or violations, and talk with management staff.
- 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.
- If these efforts fail, utilize your state regulatory agency’s complaint reporting process. The agency will need the information you have in writing and will refer you to the staff person who takes reports of complaints or violations.
- The regulatory agency will determine whether investigation is warranted. If an investigation is conducted, follow up to learn what they found and what to expect the provider to do in response.
Additional or alternative actions:
- Many providers have family councils, organized to provide families with a voice and a venue for discussion, learning and interacting with the administration on behalf of all consumers and their families. Often, councils also provide occasional activities for consumers. Consider becoming involved with the family council if your loved one’s provider has one. If not, you may want to advocate for the establishment one.
- Each state has a long-term care ombudsman program to assist consumers in resolving individual quality of care issues. You can find your state’s ombudsman at theconsumervoice.org/get_help. Ombudsman programs vary in structure and scope. Ask if yours is independent or part of a governmental agency and if they take cases in assisted living, in-home care, day services and the like. 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 to any potential conflict of interest.
Advocacy is hard work requiring persistence and determination. But the rewards of success are immeasurable.
