Advocacy to Improve Care, Dignity, and Accountability

1. 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

2. 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.

3. 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

4. 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.

5. Background: The Nursing Home Reform Law • The federal law requires that everynursing 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.

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

7. 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.

8. 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.

9. 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.

10. 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.

11. 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.

12. 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.

13. 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.

14. LTCCC Advocacy (continued)

16. 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.