Moving to assisted living can feel like giving up your independence. If you are talking to a parent about assisted living, they might want to resist, based on the belief that there will be restrictions on their privacy and freedom. It is true that assisted living has rules of conduct, and congregate living differs from living in your home. Designated meal times, scheduled activities, and other restrictions can feel confining.
Jump ahead to these sections:
- What Rights Do Assisted Living Residents Have?
- What Can Assisted Living Residents Do If Their Rights Are Violated?
As you and your family consider the pros and cons of moving to assisted living, understanding resident rights can make the transition easier. Moving into a community where residents have different levels of physical and mental impairment can feel disempowering.
To some degree, admitting that you need help is an admission of dependence, but it is important to remember that you have rights along with responsibilities.
What Rights Do Assisted Living Residents Have?
Assisted living facilities, unlike nursing homes, do not have federal oversight. Each state develops and oversees assisted living rules and regulations.
Some states have very lax oversight, and others are more involved. Ask to review requirements for your state, which will tell you the rights of residents, training requirements, eviction criteria, and frequency of inspections.
The rights we will identify might exceed what your state requires. That doesn’t mean that you only have those rights. Federal laws protect older adults from neglect, abuse, and exploitation.
Participate in and have knowledge of the care plan
Before you move into assisted living, a nurse will evaluate your activities of daily living and any medical needs you have. Assisted living is not a nursing home, and state requirements may restrict admission based on the level of care you need.
When the assisted living facility accepts you for admission, the nurse will develop a care plan that describes the assistance you need. You have a right to participate in and know what that care plan is.
Know how the care plan is developed and costs associated with the plan
Most assisted living facilities charge a base rate that includes your rent and amenities such as activities, meals, and housekeeping. Every person who moves to assisted living has a different set of needs. One person might need help with bathing, and another might want help with getting to meals.
Depending on the facility, your costs will increase associated with how much help you need. You have a right to know how pricing is determined. You might decide that you can do some tasks independently and want to have the opportunity to try. However, the assisted living facility has the right to inform you that they don’t think you are safe and recommend additional support.
Manage personal financial affairs unless restricted by law
You have the right to know what your costs are and to manage bill paying. If there are cost increases, you have the right to know why.
The exception to this would be if you are under guardianship and, by law, someone else is in charge of your finances.
Be treated with respect and dignity
To be treated with respect and dignity means you have the right to establish boundaries and decide for yourself what respect means.
Derogatory or insulting language from staff is not acceptable under any circumstances. As an aide comes to help you bathe or dress, you have the right to ask for and receive privacy to the extent that it doesn’t compromise your safety.
Be free from neglect, financial exploitation, verbal, mental, physical, or sexual abuse
These rights probably seem apparent, but violations of these rights do happen in assisted living.
Unfortunately, some of these violations happen at the hands of family members, but can also occur from staff. You should notice and report even minor offenses. It is human nature to want to give people the benefit of the doubt, but one violation can sometimes lead to another worse one.
Have access to your medical records
Federal law mandates that anyone has a right to their medical records upon demand. Your medical records belong to you, and you can ask to review them and to have copies. This right also applies to your care plan, medication changes, and nursing visit reports.
Some assisted living facilities have agreements with home health and private duty agencies to provide their resident’s services. Despite an assisted living facility’s recommendation, you have the right to choose any outside care agency you want.
Voice complaints and suggest changes in policies and services to staff without fear of retaliation
Many assisted living communities schedule monthly resident meetings where everyone has an opportunity to express concerns and make recommendations. Beyond those meetings, you have the right to speak with the executive director to voice complaints or make suggestions without retaliation. Staff at assisted living communities can sometimes feel bombarded with complaints on everything from the food to staff neglect.
Retaliation can take the form of ignoring or denigrating your complaint or staff being disrespectful. One suggestion is to make your complaint or suggestions in writing, so you have a record of the communication and response should you need it.
Have a safe environment
You probably don’t think much about your environment in assisted living until you notice something. A safe environment is one where repairs are made in a timely fashion, and emergency procedures are clear. Food services should follow health department standards.
You also have the right to be safe from other resident’s pets and even other residents! If you feel harassed or otherwise bothered by staff or residents, it is your right to file a complaint about it.
Be free of discrimination with regard to race, national origin, gender, sexual orientation, or religion
The federal Fair Housing Act prohibits discrimination based on race, color, national origin, sex, familial status, and disability. States may enact laws that are more protective of individual rights than the standard set by federal law. These additional protections could include sexual orientation or marital status.
“Senior housing facilities and communities are exempt from liability for familial status discrimination under HOPA. Senior housing facilities or communities can lawfully refuse to sell or rent dwellings to families with minor children'' under the Housing for Older Persons Act. Under this act, senior living facilities can also mandate age restrictions.
Have medical and other records kept confidential
You might understandably assume that your medical records are kept confidential from family members. There could be circumstances where you do not want certain family members to access your medical records.
Legally, only your health care power of attorney has the right to view your medical records. If you decide to make copies of your medical records, you have the right to distribute those as you choose.
Receive proper notification of discharge from the facility
Improper and inappropriate discharge from assisted living facilities is more common than you might think. It is legal for any assisted living to evict someone from their community as long as they follow state laws regarding discharge notice. There is no uniform federal law regarding assisted living discharges.
The minimum notice is 30 days, but you want to make sure that you know how much time you have and that the facility is complying with the agreement you signed at admission. Assisted living communities are within their rights to ask someone to leave if they can’t properly care for the person or the resident is a safety risk to themselves or others.
Be free from physical or psychoactive restraints
Physical restraints are not acceptable nor legal in assisted living. Should a resident become out of control, the proper authorities are called to manage these situations, such as mental health workers or emergency personnel.
The emergency use of psychoactive medications would have to be ordered by a physician and consented to by the resident.
Be free to come and go from the facility
Except for memory care, you have the right in assisted living to come and go freely. Doors might be locked past a certain hour, but you should have access past that time.
You also have the right to leave your apartment for long periods as long as you continue paying rent or negotiate a reduced payment.
Refuse any service understanding the consequences
As a resident of assisted living, you have the right to refuse care and any other service, but you may be asked to sign a negotiated risk agreement or something similar.
The purpose of a negotiated risk agreement is for the assisted living facility to avoid liability for adverse outcomes based on your refusal to receive specified care.
The other consequence of refusing care is the possibility that the assisted living facility may deem you unsafe to continue to reside in their community.
Have access to social and other activities
Suppose you are hard of hearing or have a physical disability that limits your ability to independently access activities. In that case, you have a right to expect that the assisted living staff will make reasonable accommodations.
The Americans with Disabilities Act protects people with disabilities from discrimination. The extent to which this law applies to disabilities in assisted living communities will vary, but you have the right not to be segregated or excluded from activities due to a disability.
What Can Assisted Living Residents Do If Their Rights Are Violated?
Given that each state has different departments, laws, and policies that govern assisted living, making formal complaints to those agencies can get complicated. Taking a step-by-step approach is best, but keeping in mind the severity and urgency of the violation may dictate that you need to call state authorities immediately.
File a complaint with the assisted living facility
For a rights violation that you consider minor, such as accessibility, staff respect, or another non-urgent infraction, file a complaint with the assisted living executive director.
Doing so in writing will give you a record of the complaint should you follow up with a state agency.
Call the long-term care ombudsman program
The Ombudsman program is responsible for investigating complaints in long-term care facilities.
A long-term care ombudsman is a government official who oversees nursing homes and assisted living facilities. Ombudsman staff visit facilities, investigate complaints and advocate on behalf of residents and families.
Call Adult Protective Services
Adult Protective Services (APS) investigates cases of abuse, neglect, or exploitation, working closely with various professionals such as physicians, nurses, paramedics, firefighters, and law enforcement officers. Each state will vary in terms of the scope of services they offer.
File a written complaint with the state agency
Every state has an agency or program responsible for licensing and overseeing assisted living facilities.
These agencies track complaints of rights violations, and notifying them is a good idea. However, the Long-Term Care Ombudsman or Adult Protective Services program should refer any violations you make to the appropriate agency.
Residents Rights in Assisted Living
Making the transition to assisted living can feel chaotic, confusing, and complicated. Talking about and establishing your loved one’s rights as a resident will help them feel empowered. As a family member, your responsibility is to ensure that your loved one is cared for and respected.
Sources:
- “Housing Discrimination Under the Fair Housing Act.” U.S. Department of Housing and Urban Development, hud.gov/program_offices/fair_housing_equal_opp/fair_housing_act_overview.
- “Fair Housing Law Exemptions for Senior Housing.” Community Housing Law, communityhousinglaw.org/legal-topics/fair-housing/fair-housing-law-exemptions-senior-housing.
- “Americans with Disabilities Act.” U.S. Department of Labor, dol.gov/general/topic/disability/ada.