Due to the absence of national standards for assisted living and significant differences among the states, consumers are faced with a situation that can be confusing and that has a high potential for misunderstanding and even fraud.  For instance, an individual might need help taking medication.  How, and by whom, is it determined whether she is self-directing or needs substantial “medication management”?  Who is legally capable of providing that level of help?  Who is responsible if there is a problem?  What happens if she requires more care as time goes on?  Can the facility ask her to leave?  Can she appeal that decision?  What happens if she runs out of money?

As a result of these and other issues, assisted living advocacy takes many forms.  Advocacy can focus on issues ranging from quality of health and personal care to contractual rights to landlord-tenant rights and responsibilities.  Following is an overview of some key assisted living advocacy issues, on both policy and individual consumer levels.  We invite you to check this page in the future for updates on our advocacy work and for information on what consumers and consumer advocates can do.

Policy Advocacy

• Law.  States regulate assisted living in very different ways, in part, because they define assisted living differently.  Even the names used by states to identify these facilities are different, with common terms including adult homes, enriched housing, senior residences, and congregate housing.  An important avenue for advocacy on the state level is working with state leaders to ensure that laws address the state’s unique assisted living situations.  It is crucial that laws provide strong protections for consumers, transparency in defining facility and resident rights and responsibilities, and meaningful and effective enforcement mechanisms.  For more information, see Robert Mollica’s report for the Agency for Healthcare Research and Quality, Residential Care and Assisted Living: State Oversight Practices and State Information Available to Consumers (http://www.ahrq.gov/research/residentcare/residentcare.pdf) or the “assisted living state regulatory review” published annually by the National Center for Assisted Living  (a provider group) (http://www.ncal.org/about/2007_reg_review.pdf).  

• Regulation & Oversight.  Laws and regulations provide the crucial bases for consumer protections, but they are meaningful only with good oversight and regulatory enforcement.  Advocacy can include directly engaging state agency officials who are responsible for oversight (informing them of problems and violations, holding them accountable for strong oversight, etc.) as well as working to improve regulatory oversight by engaging long-term care ombudsmen and policymakers.  Advocates need to support oversight work and make sure that regulatory staff are empowered, both financially and politically, to provide meaningful oversight.  The Government Accountability Office’s 2004 report, Examples of State Efforts to Improve Consumer Protections, focuses on state activities and regulatory practices of interest to advocates (http://www.gao.gov/new.items/d04684.pdf).

Individual Advocacy

• Residents’ Rights.  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).

• Contractual Rights. 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).

• Tenancy Rights. 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).

• Fraud. 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.

• Long-Term Care Ombudsman Advocacy.  Assisted living poses unique opportunities and challenges for long-term care ombudsmen.  The National Long Term Care Ombudsman Resource Center’s paper, Translating Nursing Home Ombudsman Skills to Assisted Living: Something Old, Something New, is a good resource for ombudsmen interested in meeting these challenges (http://www.ltcombudsman.org/uploads/TranslatingNHtoALAdvocacy0303.pdf).