Often specified in a state’s law or regulation, residents’ rights in assisted living include freedom from discrimination based on race, gender, religious belief, or sexual orientation; ability to receive and review copies of all written information relating to services offered, costs, etc; ability to live in a safe environment where one’s possessions, physical being, and privacy are protected; and freedom to be informed and to make choices regarding their condition, care, and needs. These and other enumerated resident rights are extremely important. A more extensive listing and discussion can be found on the website of the California Advocates for Nursing Home Reform (an ALCA member) (http://www.canhr.org/RCFE/RCFE_FS_html/rcfe_resrights_fs.htm).
Autonomy & Independence
Although assisted living is promoted with the promise that people should maintain autonomy and independence for as long as possible, even when they need help with some activities of daily living, very often, assisted living residences overly curtail residents’ freedom. The Long Term Care Community Coalition and Coalition of Institutionalized Aged and Disabled (both ALCA members) have developed guides for consumers and providers to help them achieve the promise of assisted living (www.assisted-living411.org).
Alzheimer’s and Dementia Care
At least 50% of assisted living residents are believed to have Alzheimer’s disease or other forms of dementia. Many people choose assisted living as a place that will provide both a good living environment and safety for people with dementia. However, facilities vary greatly in their ability and willingness to care for people with dementia. The Alzheimer’s Association has information and resources for people interesting in learning more about what they can do (http://www.alz.org/Advocacy/priorities/longtermcare/assisted.asp).
An assisted living facility may not include provisions in its contract that exempt the facility from legal responsibility if a resident suffers harm or injury. Such “waiver” provisions are illegal and unenforceable as a matter of public policy. In addition, some assisted living facilities may ask residents to sign a “negotiated risk” agreement, which releases the facility from liability for certain areas of care. Such provisions should not be part of a resident’s contractual agreement with the facility. More information on residents’ contractual rights can be found on the website of the National Senior Citizens Law Center (an ALCA member) (www.nsclc.org).
Tenant rights may be important in assisted living facilities to protect residents from eviction and retaliatory actions. Many states extend landlord-tenant protections provided under state law to assisted living residents. In these states, residents are considered to be tenants of the facility, because they are, in effect, “renting an apartment,” and facilities, therefore, cannot discharge residents without proper notice or legal procedures. For example, in Massachusetts, assisted living facilities cannot prohibit residents from returning to their apartments when they have been out of the community due to hospitalization. More information can be found on the Massachusetts’s Executive Office of Elder Affairs website (http://www.mass.gov/Eelders/docs/assisted_consumer_guide.pdf)
Residents of assisted living facilities are protected under standard contract laws when the facility has committed fraud or misled a resident. If the facility arranges for or performs government-paid services – such as Medicaid services – such facilities are also accountable for fraud in the performance of those services (for example, if services are billed to Medicaid but not provided to the residents, or if unnecessary Medicaid services are provided). Advocacy activities might focus on supporting Medicaid fraud whistle-blower laws with qui tam provisions (which give a financial incentive to individuals who report fraudulent activities), supporting laws and regulatory enforcement to protect residents in assisted living contracts (for instance, by requiring facilities to be clear and specific about services provided and associated costs), and by educating residents and their families on these issues and how to be “educated consumers” of assisted living.