1. Strengthening Resident and Family Councils Resident Rights November 2017
Welcome to this educational program, “ Resident Rights” part of an initiative on Strengthening Resident and Family Councils and Engagement.
I’m Paula Griswold, the Executive Director of the Massachusetts Coalition for the Prevention of Medical Errors.
Our Coalition was contracted by the Massachusetts Department of Public Health, the sponsor of this initiative to increase resident and family engagement in Massachusetts nursing homes, and improve the quality of life for residents.
The project is funded through the federal government Center for Medicare and Medicaid Services.
Welcome to this educational program, “ Resident Rights” part of an initiative on Strengthening Resident and Family Councils and Engagement.
I’m Paula Griswold, the Executive Director of the Massachusetts Coalition for the Prevention of Medical Errors.
Our Coalition was contracted by the Massachusetts Department of Public Health, sponsor of this initiative to increase resident and family engagement in Massachusetts nursing homes, and improve the quality of life for residents.
The project is funded through the federal government Center for Medicare and Medicaid Services.

2. Introduction Goals Engage residents and families
Partner with nursing homes on improvement
Improve quality of life for residents
A main goal of this work is to increase engagement of nursing home residents and families, first, to express your concerns and suggestions., since your perspective is crucial.
We are also encouraging you to work together as partners with nursing home leaders and staff to make changes that improve the quality of life for residents .
As a resource for you as family members and residents, we are offering this brief educational session on Resident Rights.

3. Executive Director, National Consumer Voice for Quality Long-Term Care
Resident Rights
Lori Smetanka, JD
Executive Director, National Consumer Voice for Quality Long-Term Care
We are extremely fortunate to have as our presenter, Lori Smetanka, Executive Director of National Consumer Voice for Quality Long Term Care, where she contributes to the organization’s policy, advocacy and program activities.
Prior to that role, Lori was the Director of the National Ombudsman Resource Center.
Now, with our thanks, I’ll turn it over to you, Lori -

4. Residents’ Rights
Residents of nursing homes have rights that are guaranteed by federal and state law. Nursing homes are required to promote and protect the rights of each resident.
Thank you Paula. Living in our own homes, we take for granted certain rights and expectations, such as having privacy, or making decisions about our daily lives. Individuals living in nursing homes have the same rights and should have the same expectations as people living in other settings. Further, each nursing home resident is guaranteed rights by federal and state law.
When a person enters a nursing home, a copy of the residents’ rights are to be provided by the facility in a language and manner that the resident understands. The resident should ask for the language they need if necessary.
Residents should be able to exercise their rights without fear of retaliation from the administration, from staff, or from anyone else. In fact, the nursing home has a responsibility to help each resident live their best life, and to promote and protect the rights of each individual.
By exercising their rights, residents maintain primary control over their care and lives, which goes a long way towards helping them achieve their highest possible level of physical, mental, and psychosocial well-being.

5. Dignity and Respect
Freedom from abuse, neglect, exploitation, misappropriation of property
Freedom from physical or chemical restraints
Quality of life
Make choices about things that are meaningful to them
Use of personal belongings
Security of possessions
Each resident of a nursing home has the right to be treated with dignity and respect. This means that they should be treated with kindness, recognizing their importance as a human being and as an individual with their own history, beliefs and values.
It also means that each resident has the right to be free from abuse. Abuse can take multiple forms – physical or verbal, sexual, psychosocial abuse or bullying. Abuse can also take the form of exploitation, misappropriation, or theft of the resident’s money, property, and belongings. Nursing homes are required to protect residents, and if there are concerns that a resident has been abused, there are requirements about reporting the concerns to the proper authorities. Steps must be taken by the facility to safeguard the resident’s money or belongings as much as possible.
The right to be free from any of these forms of abuse applies regardless of who might be the cause. Irrespective of whether the perpetrator is a staff person, a friend, family member, or even another resident; all residents have the right to be free from abuse, and to receive help if they are victimized.
Nursing home residents have the right to be free from neglect. Neglect occurs when there is a failure to provide the care and services that the person requires, whether that be food or hydration, help with hygiene, or the care necessary to prevent the formation of pressure ulcers. Residents have the right to quality care and services that meet their needs, as defined by their plan of care.
Each resident also has the right to be free from the use of physical or chemical restraints. That means that a nursing home cannot physically restrain a resident – such as by tying their arms or legs to a bed, or tying them to a chair to prevent them from getting up. A chemical restraint is the use of a medication, not for treatment of a clinical diagnosis, but rather to alter the individual’s mood or cause them to be subdued or lethargic. Restraints – physical or chemical – cannot be used unless necessary to treat the resident’s clinical symptoms, and they cannot be used for discipline or the convenience of staff. The use of restraints has been shown to cause other, serious problems, that prevent a resident from reaching his or her best life and highest level of well-being.
Treating a person with dignity and respect means also supporting quality of life for him or her– and that includes honoring their choices, and helping them to feel at home in their environment. What makes you feel at home? Having control over what you wear? When you get dressed? Participating in activities you enjoy? Having your favorite things around you? Residents have the right to make decisions about things that are meaningful to him or her, and those choices are to be respected.
To further that feeling of home, residents have the right to a safe, clean environment, and to be able to have and use personal belongings to the extent possible. That might include items they bring with them from home – pictures, decorations, possibly even some furniture depending on the space in their room. The nursing home has a responsibility to take reasonable care to protect the residents’ property or possessions from loss or theft.

6. Self-Determination Accommodation of needs, preferences
Choice – activities, daily schedule, health care providers
Participation in decisions about care, including development of care plan
Person-centered care
Request or refuse treatment
Participate in resident and family groups
Manage finances and personal affairs
The right to make choices, and having the ability to make decisions about their life and their care are very important rights provided to residents under the law.
Self-determination includes having choices and making decisions about aspects of daily life that are important and meaningful to them. Residents have the right to choose things such as what their daily schedule should look like – when to wake up and when to go to bed; what activities they participate in; or how they spend their time. It could also mean attending religious services in a church of choice, or participating in community activities that they enjoy. It means having control over one’s own life.
Residents also have the right to make decisions about their care – including the ability to request or refuse treatment – and to be an active participant in the development of their plan of care. Just as it sounds, the plan of care involves deciding what care and services a resident will receive to help them reach their goals. It is created by the resident and the staff. When a person enters a nursing home, the staff conduct an assessment – an evaluation that collects information about the resident’s needs – do they need help with eating, or bathing? Do they need a walker or wheelchair to get around? Do they need a special diet, or rehabilitative services? What was their life like before coming to the nursing home? Then the staff, along with the resident and any other person the resident chooses should review the assessment, discuss the resident’s goals, and decide upon the plan of care that will help the resident meet those goals. The resident has the right to participate in the development of their plan of care, as well as make decisions about the care and services to be provided. This concept is called person-centered care. The development of a plan that revolves around the resident’s goals and preferences, with them at the center of decision-making, is an important principle for achieving quality care and quality of life.
In addition to making choices about their care, residents also have the right to choose their healthcare providers – including their own personal physician, and other medical professionals.
Choice and self-determination also come into play in other aspects of the resident’s life. For example, he or she can decide to maintain control in managing their personal affairs and finances, including paying their own bills. Or they can designate someone to do it on their behalf. If the resident asks the nursing home to hold their money, the nursing home must keep the money in a separate account and provide a regular accounting of how much is available.
Self-determination means putting control around visitation with the resident. The resident has the right to receive visitors, at a time that is convenient for them. That includes early mornings, or late at night if that’s what works best for the resident and their visitor. While a resident and their visitor(s) cannot infringe upon the rights of others, reasonable accommodations must be made for their visit. And not only does the resident have the right to decide what visitors they will see and when, they can also refuse visitors.
Residents have the right to meet with resident and family groups, generally called councils. A nursing home must provide a resident or family council a private place to meet in the facility, and must designate a staff person to provide assistance if it is needed. Councils serve numerous important purposes. They can raise concerns or complaints that an individual might not feel comfortable raising; they can be a forum for discussion and learning; and they can also provide important input or suggestions to the administration or staff on how to improve care and quality of life.

7. Privacy Personal, financial, medical affairs Communication with others
During treatment and provision of care
Nursing home residents have the right to privacy. That includes privacy during treatment, and when being provided personal care.
It means staff and visitors should knock on the person’s door and wait for them to answer before entering. Asking if it’s ok to come into their room. It means pulling the curtain closed, and shutting the door to the hallway when personal care is being given, or when the individual is getting dressed.
The right to privacy includes privacy in communication or contact with others, both in person and on the phone – such as with a doctor or other medical professional when they visit or call to discuss the individual’s care, to do an examination, or to provide treatment. It pertains to conversations and visits with family and friends, so that they have the opportunity to talk among themselves or have some private time together. It includes a resident’s communication with others, such as a member of the clergy or an attorney, and including an ombudsman, who can help resolve concerns the resident may have about their care or quality of life.
The right to privacy involves not only private communication with the resident directly, but also to communications between staff and visitors. A resident’s right to privacy should be respected by not sharing information about a resident’s health condition with anyone. It involves any communication, whether verbal or written, that the resident would like to have or be kept in private.
The right to privacy also includes privacy in their financial, and medical affairs. Information about the resident should not be shared with anyone, including others in the nursing home, visitors, even family members, without the resident’s consent, or unless they have legal authority, such as a guardian or other legal representative. This includes access to the resident’s medical records or information, and also about the resident’s finances.

8. Be Fully Informed In a language and manner s/he understands
Type of care being provided, risks and benefits
Changes to health status, plan of care
Contact information for the LTC Ombudsman and State Survey Agency
Nursing home residents have the right to be fully informed about all aspects of their health and care. That includes the right to be informed about the type of care and services being provided to them and who is providing that care.
It also includes giving information about the risks and benefits of any treatment options so that the resident can make an informed decision about what care and services they would like to receive.
Residents have the right to know about their own health status, as well as any changes to their health status or their plan of care. Too often health care providers, including some nursing home staff, will talk to the family or representatives of the resident, and not the resident themselves, about changes in condition or about the plan of care. But unless the resident has designated another person to receive that information, or unless they have been determined to be incompetent by a court, the resident has the right to this information.
Information about their rights must be provided in writing to a resident. The nursing facility must also provide contact information for the long-term care ombudsman program – whose representatives are advocates for residents in nursing homes – as well as the state survey agency, which oversees and monitors nursing homes for compliance with federal and state requirements.

9. Around Transfer/Discharge
30-day written notice – reason, effective date, location, appeal rights
Preparation and orientation for discharge
Right to return after hospitalization
Should a nursing home attempt to transfer or discharge a resident, that individual has rights that must be followed. The resident must be given written notice of the transfer or discharge, 30 days in advance.
That notice must include one of the six acceptable reasons for transfer or discharge – reasons such as:
the resident needs care or services that the nursing facility cannot provide,
the resident no longer needs nursing facility care,
they pose a danger to the health or safety of others at the facility,
they have failed to pay the nursing home for care provided, despite notices requesting payment, or
the facility is going to close.
The written notice must also include the effective date of the discharge, the location to which the resident will be discharged, and information about how to appeal the nursing home’s decision. Residents needing help with appealing a discharge notice should contact their ombudsman right away.
Before a resident is discharged, the nursing home must provide them with sufficient preparation and orientation for a safe and orderly discharge.
And if a resident is sent to the hospital for care, they have the right to return to the nursing home to their bed, or to the first available bed, if their specific bed is no longer available.

10. Exercising Your Rights
Resident assessment and care planning
Expressing needs and preferences
Identifying when changes are necessary
Participating in the Resident or Family Council
Be informed
Residents can exercise their rights in various ways …
Be sure to speak up during the assessment and care planning process. Residents should let staff know what their needs and preferences are … their likes and dislikes … their daily routines… so that the plan of care can best reflect what will work for that person. If you have a change in condition, let staff know so that the plan of care can be updated appropriately.
Seek out activities inside the nursing home and in the community. Join the Resident Council and be an active participant.
Be informed. Know your rights and responsibilities. A nursing home is required to provide residents with information about their rights.
If a resident feels they are not being respected, or their rights are being infringed upon, talk to the staff or administration, or bring it up at a resident council meeting. Seek out the ombudsman for assistance.

11. Raise Grievances Raise grievances without retaliation
Efforts by the facility to resolve
Long-Term Care Ombudsman as a resource
See the webinar program “Problem Solving in Long-Term Care” that is part of this series.
Should a resident have concerns about their care or the services provided by the nursing home, they have the right to complain or raise a grievance without fear of retaliation by the nursing home or its staff. In addition, the nursing home must take efforts to investigate and resolve any grievances raised by the resident, and to keep the resident informed about what steps were taken.
A resident also has the right to file a complaint with the long-term care ombudsman about the care provided, life in the facility, or concerns about violations of their rights.
More information about grievance and getting help is provided in the webinar program called “Problem Solving in Long-Term Care,” part of this webinar series.
Understanding and exercising one’s rights is key to achieving quality of life, and quality care, in a nursing home. Thus it is important for residents and family members to be well informed.
Thank you so much Lori, for so clearly describing the rights of residents in nursing homes. That was really excellent, and will be a valuable resource for our audience.
Thank you all for joining us – that concludes this educational session.