Ombudsman Programs: Advocacy in Board & Care Present. Louise Ryan, MPA Ombudsman Program Specialist, ACL/AoA October 26, 2013

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Ombudsman Programs: Advocacy in Board & Care 1981- Present Louise Ryan, MPA Ombudsman Program Specialist, ACL/AoA October 26, 2013

A quick journey of 32 years.. Review history and evolution of board and care & assisted living Older American s Act as it relates to Board & Care Ombudsman Advocacy efforts The current landscape and resident issues Ombudsman best practices

Older American s Act: 1981-Present The 1981 reauthorization of the expanded the ombudsman duties. In addition to nursing homes, board and care homes were included and the name was changed from Nursing Home Ombudsman to Long-Term Care Ombudsman (LTCO) to reflect this change. The term board and care facility means an institution regulated by a State pursuant to section 1616(e) of the Social Security Act (42 U.S.C. 1382e(e)).

Older American s Act (continued) The term long-term care facility means... (C) for purposes of sections 307(a)(12) [1] and 712, a board and care facility; and D) any other adult care home, including an assisted living facility, similar to a facility or institution described in subparagraphs (A) through (C). OAA gives a broad brush to the definition of Board and Care

Older American s Act (continued) Section 712 - ADMINISTRATION. The State agency shall require the Office to (1) prepare an annual report (E)(i) analyzing the success of the program including success in providing services to residents of board and care facilities and other similar adult care facilities; (1987) Congress Directed AoA to study impact of ombudsmen programs on board and care residents and report to Congress by December 31, 1989

The Landscape - Media attention in the 1980 s one described Board and Care as modern-day warehouse for adult orphans and the forgotten elderly

Joint Congressional Hearing - Board and Care: A Failure in Public Policy Publicized conditions in board and care homes, including conditions found in unannounced visits conducted by the Subcommittee on Health and Long Term Care (March 1989) 1989 investigated 47 facilities in 10 States findings illegal administration of drugs, filth and misappropriation of resident s funds DC resident Alice L leaking roof over her bedroom, no heat, hot water, vermin, one resident was murdered Sacramento resident John S. owner was arrested for the murder of seven residents

Ombudsman Involvement 1980 s DC Ombudsman Ann Hart provided key testimony in Congressional hearing as well as local Ombudsmen Julie Oetting - Alabama, Michael Coonan - California, Mary Beth Africa - Pennsylvania and Ms. Pat Murphy - New York Reports: GAO Board & Care: Insufficient Assurance That Residents Needs are Identified and Met February 1989 Congressional Subcommittee Report: Health & Long-Term Care and House Subcommittee report which includes a discussion of Ombudsman Program

Report Findings GAO States Ombudsman Programs have varying degrees of oversight of board and care homes References a previous report by AARP & NASUA(D) that 48 of 54 Ombudsmen believe that it is just as important to visit board and care homes as nursing homes but Half felt unsuccessful in maintaining a presence in B & C Sub-committee report notes that the only active or effective advocate for board and care residents discovered in many States was the LTC Ombudsman program this is likely still true today.

Findings Continued House subcommittee surveyed 50 State Ombudsmen On average the Subcommittee found that ombudsmen spent about 16% of their time dealing with board and care issues and complaints 60% of LTCO reporting increasing number of problems Other Ombudsmen Work: Region V 1990 Work plan included a Board & Care Initiative Issues & Findings: Concerns and Opportunities no consistency in regulation and oversight, potential community option; no required training of facility staff

Region V (continued) IL - lack of oversight; unlicensed homes but also a potential alternative to nursing homes MI Staffing & staff training; aging in place & related challenges; ability to pay for B & C MN Run like mini nursing homes; large & growing number housing older persons with mental illness, unregulated OH Maintaining Quality but not over regulating; important resource in the long-term care continuum

Region V (continued) WI Need a reliable funding source to raise quality of life; need sufficient number of surveyors to monitor; implement proposed regulations allowing sanctions including fines and forfeitures The 1990 s - Growth of Assisted Living Dramatic growth as of 1999 one-third of facilities calling themselves assisted living had been in business five or fewer years Initially developed in the absence of regulation or public financing.

Assisted Living Oregon passed first licensure regulation specifically directed at assisted living in 1989 Hawes & Phillips report on Assisted Living 2000 Resident perceptions: Generally felt treated with respect Concerned about staffing & turnover Rarely asked about activity preferences 12% help with some type of ADL 26% help using the toilet & reported unmet needs

Hawes & Phillips (continued) Nine of ten believed they would be able to stay as long as they wished Most were uninformed about facility policies on retention & discharge Assisted Living Workgroup Result of the April 2001 hearing held by the U.S. Senate Special Committee on Aging, committee staff members asked assisted living stakeholders to develop recommendations designed to ensure more consistent quality in assisted living services nationwide

Assisted Living Workgroup (continued) Composed of a balance of diverse stakeholders for maximum effectiveness NASOP represented in Resident Rights and Resident Direct Care Services Committees (Joani Latimer, VA LTCO and Jerry Kasunic, DC LTCO) Directed to develop a uniform definition of assisted living that would provide consumers a clear understanding of what kinds of services they should expect in assisted living. Not able to reach consensus

Policy Principles for Assisted Living (April 2003) 1. Strengthen Standards Supported by NASOP & NALLTCO 2. Define Assisted Living in a Meaningful Way 3. Establish more than one level of AL licensure one size does not fit all 4. Should be subject to the same non-discrimination rules as nursing homes 5. The federal government should take an active role in assuring quality care

The Current Landscape National Survey of Residential Care Facilities Approximately one-half of RCFs were small facilities with 4 10 beds. The rest were medium facilities with 11 25 beds (16%), large facilities with 26 100 beds (28%), and extra large facilities with more than 100 beds (7%). 38% chain affiliated and 82% private, for-profit Most located in the West 42% (small facilities) and least common in the Northeast (8%) mostly large. Midwest & South more even distribution of small, medium & large Primarily private pay but 43% had at least one resident who had some or all of services paid by Medicaid

Ombudsman Data: Who is the Complainant? Complainant = Resident Complainant = Family 45.00% 25.00% 40.00% 35.00% 20.00% 30.00% 25.00% 20.00% 15.00% Nursing Facilities Resident B & C Resident 15.00% 10.00% Nursing Facilities Relative B&C Relative 10.00% 5.00% 5.00% 0.00% 2002 2007 2012 0.00% 2002 2007 2012

Complainant? Complainant = Ombudsman Complainant = Staff 25.00% 25.00% 20.00% 20.00% 15.00% 10.00% Nursing home- Ombudsman B & C Ombudsman 15.00% 10.00% NH-Staff B & C Staff 5.00% 5.00% 0.00% 2002 2007 2012 0.00% 2002 2007 2012

Complainant All others 20.00% 18.00% 16.00% 14.00% 12.00% 10.00% 8.00% Nursing Home All Other B & C - All Other 6.00% 4.00% 2.00% 0.00% 1.00 2.00 3.00

Complaint Trends -2012 Nursing Home improper eviction, inadequate or no discharge planning; unanswered requests for assistance; lack of respect for residents, poor staff attitudes; quality of life, specifically resident/roommate conflict medications their administration and organization; Board & Care medications their administration and organization; improper eviction, inadequate or no discharge planning; quality, quantity, variation and choice of food; lack of respect for residents, poor staff attitudes and equipment or building hazards

Snapshot of Ombudsman Activity 2012 Complaints: 2012 data B&C complaints range from 7 to 11, 673 Complaints per 100 beds ranged from.09 to 33 with an average of 4 and a median of 3 (half states below and half above) Visits: 24 states at 25% or less routine visits compared to NH where only 7 states are at 25% or less 24 states visit NH at 90% or above; 13 states visiting B&C at 90% or above

Visits: 2002-2012 100.00% 90.00% 80.00% 70.00% 60.00% 50.00% B&C, ALF, RCF and Similar Facilities Nursing Facilities 40.00% 30.00% 20.00% 10.00% 0.00% 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012

B & C Systems Advocacy Reported in 2012 Montana Developed an Assisted Living Toolkit for consumers Oregon in 2011 developed a handbook for providers which outlines specific process around resident rights move out rules report decrease in related complaints in 2012 Minnesota - Housing With Services/Assisted Living Study: 1. Research the existence of differential treatment based on source of payment in assisted living settings; 2. Convene stakeholders to provide technical assistance in studying and addressing these issues and 3. Submit a report of findings

Systems Advocacy (continued) Georgia - Unlicensed Personal Care Homes - Legislation to combat the problem. Oklahoma - Freedom of Choice in Assisted Living facilities. Worked to pass legislation to allow for Residents freedom of choice for pharmacy services. Texas - Sought state funds to support hiring 28 assisted living long-term care ombudsmen statewide and one state office professional to provide routine visits to ALFs and identify and respond to complaints.

Systems Advocacy (continued) Florida - working on legislation & regulatory reform in assisted living for better resident protection and quality of life. Washington Continued legislative work on quality assurance and oversight in adult family home settings issued a report in December 2012 These are some highlights that were reported in 2012 NORS. You may have your own success stories please share them!

The Ombudsman Re-balance Challenge Ombudsman Programs are challenged to meet growing resident needs (in all settings) often with fewer resources, an increase in complicated complaints and other pressures of an evolving long-term care system. Addressing board and care can be overwhelming due to a lack of dedicated staff, volunteers, addressing special needs, regulatory inconsistencies If your state is one with low activity in board and care consider what can you do systemically to promote quality of life and rights for persons living in these settings.

Finally a Shout Out to former LTCO & Current Assistant State LTCO

Ombudsmen Specific: References/Resources Oregon guidance for Successful Transitions in Oregon Assisted Living and Residential Care http://www.oregon.gov/ltco/docs/successful%20ltc%20transition.pdf Montana Assisted Living Rights Brochure http://www.dphhs.mt.gov/sltc/services/aging/reports/ombassistedlivingresident.pdf Washington State Adult Family Home Quality Assurance Report http://www.waombudsman.org/news/adult-family-home-quality-assurance-panel-report/ Studies & Policy Papers: Centers for Disease Control Study: Residential Care Facilities: A Key Sector in the Spectrum of Long-term Care Providers in the U.S. HHS/CDC http://www.cdc.gov/nchs/data/databriefs/db78.pdf Policy Principles in Assisted Living (NASOP & NALLTCO participated) http://www.ltcombudsman.org/sites/default/files/norc/policyprinciplesforal0403_0.pdf

References/Resources (continued) High Service or High Privacy Assisted Living Facilities, Their Residents and Staff: Results from a National Survey Hawes & Phillips November 2000 http://aspe.hhs.gov/daltcp/reports/hshp.pdf Consumer Websites: Assisted Living Consumer Alliance: http://www.assistedlivingconsumers.org/ Long-Term Care Community Coalition: http://www.assisted-living411.org/ Industry related websites: Both offer a clearinghouse for all things Assisted Living National Center for Assisted Living (NCAL) 2013 Assisted Living State Regulatory Review http://www.ahcancal.org/ncal/resources/pages/assistedlivingregulations.aspx Center for Excellence in Assisted Living (CEAL) http://www.theceal.org/