Advocacy to Improve Care, Dignity, and Accountability Gray Panthers Workshop @ the Ninth Session of the Open-ended Working Group on Ageing United Nations - July 23, 2018 Richard Mollot The Long Term Care Community Coalition www.nursinghome411.org

What is the LTC Community Coalition? LTCCC: A nonprofit organization dedicated to improving care and quality of life for the elderly and adult disabled who are in long term care (LTC). Our main focus: Residents in nursing homes and assisted living. What we do: Policy research and analysis on federal and state laws and regulations affecting nursing home and assisted living care; Education and engagement of state and federal policymakers & regulators. Education and training of consumers, families, LTC Ombudsmen, providers and other stakeholders. Richard Mollot: Joined LTCCC in 2002. Executive director since 2005.

Residential LTC in the USA Nursing homes: 15,000+ nursing homes 1.4 million residents Most LTC paid for by Medicaid; most rehab paid for by Medicare Resident protections under the federal Nursing Home Reform Law (OBRA ‘87) Assisted living: 22,000+ “residential care communities” (estimate) 713,000 residents (estimate) Mostly private pay No federal standards (with some exceptions re. Medicaid waiver programs), varied state standards

Background: The Nursing Home System Virtually all US nursing homes participate in Medicaid and/or Medicare. In order to participate in Medicaid/Medicare, a facility agrees to meet the standards provided for in the federal Nursing Home Reform Law. States may have additional protections, but no state can have less protections. Federal protections are for all residents in a facility, whether their care is paid for by Medicare, Medicaid or private pay. To provide some background...

Background: The Nursing Home Reform Law The federal law requires that every nursing home resident is provided the care and quality of life services sufficient to attain and maintain her highest practicable physical, emotional &social well-being. The law emphasizes individualized, patient-centered care. Importantly, the law lays out specific resident rights, from good care and monitoring to a quality of life that maximizes choice, dignity &autonomy.

Question: If the Nursing Home Reform Law is so GREAT, Why are so many nursing homes BAD places to live and get care?

Answer: Though the laws are strong and the standards are good, they can only make a difference in the lives of residents if they are ENFORCED.

Oversight, Accountability, and LTCCC Activities The rest of this presentation will provide… A brief review of nursing home oversight and accountability mechanisms in the U.S.; Example of LTCCC’s advocacy and accountability work; Recommendations.

The Nursing Home Enforcement Agencies The Centers for Medicare & Medicaid Services (CMS). Responsible for paying for Medicare and Medicaid services in every setting nation-wide, Responsible for developing standards for provision of care (regulations and guidelines); and Responsible for ensuring that those standards are met. CMS contracts with the State Agencies to perform oversight functions. CMS has a central office in Baltimore and Regional Offices throughout the country which directly oversee the State Agencies. State Survey Agencies (SAs). Responsible for monitoring care and ensure quality in all facilities in a state through annual inspections, monitoring, and responding to complaints.

The Nursing Home Enforcement Agencies Medicaid Fraud Control Units (MFCUs). MFCUs can have an important role in improving quality. By ensuring that public $$ is spent on quality services, they can hold nursing homes accountable for abuse and neglect. MFCUs operate in every U.S. state (except N. Dakota). State Comptroller. The Comptroller focuses on the integrity of public programs and public agencies. Because most nursing home care is paid for with public funds, they have a less direct – but still important – role in ensuring that residents receive decent care. State Office of the Medicaid Inspector General (OMIG). The OMIG also has a role in assuring that care in nursing homes and other public program is provided safely and appropriately. LTC Ombudsman Program (LTCOP). Under U.S. law, every state has a LTCOP which is supposed to operate as an independent advocate for residents. Though LTCOPs lack regulatory authority (i.e., cannot levy a penalty), of all these entities they provide the most regular and persistent presence in a nursing home.

LTCCC Advocacy Engage agencies at every level. Use the law, regulatory standards, and data to identify issues and support advocacy. What is the problem? What does the law require? What are the regulatory expectations? What do quality, performance and other data indicate? Develop tailored, appropriate materials for relevant audiences, including the various agencies, policy makers, news reporters, consumers, and the general public. What can they do? What should they do? How can we get them to do it? “Humanize” wherever possible with stories showing the impact of the problem on consumers.

LTCCC Advocacy Example The 1987 Nursing Home Reform Law prohibits both unnecessary drugs & the use of chemical restraints. Nonetheless, In 2011, the US HHS Inspector General found that over 25% of nursing home residents were being given powerful and dangerous antipsychotic (AP) drugs, typically as a form of chemical restraint – to sedate residents with dementia. LTCCC and other advocates… Met with the head of CMS, who agreed to take action, resulting in… National Partnership to Improve Dementia Care & Reduce Antipsychotic Drugging: Charging the industry to reduce AP drugging and state agencies to improve enforcement.

LTCCC Advocacy (continued) Example Has the National Partnership Been Successful? Moderately. The Partnership failed to meet its initial, modest goal. Six years later, AP drugging is down to about 20% of residents. So What Has LTCCC Done? Monitor & Report. We monitor & publish AP drugging rates for all US nursing homes, analyze progress in reducing drugging, & publish assessments of the extent to which drugging is reduced. Engage Gov’t Officials. What is happening, and what can they do? How can they use public data to improve oversight? How the data show that government agencies are not doing what they can – and should be – doing to protect residents and ensure program integrity. Educate Consumers. Know residents’ rights and how to advocate to achieve them.

LTCCC Advocacy (continued)

Recap & Recommendations Quality, safety and dignity must be assured in every setting. Settings vary and can change, but the needs and rights of individuals do not. Principles that support consumer advocacy: Society has both an obligation and a vested interest in preventing abuse, neglect, and exploitation of elderly and disabled individuals. Government has the principle role in assuring safety and dignity for vulnerable individuals. Government is the only entity that can assure that public funds are used efficiently. Basic advocacy tips: Facts are our friends – use the law, standards, and data to support your argument. Consumer stories are important to make advocacy meaningful. Education and engagement at every level – policymaker, reporters, consumers (including families) – is valuable.