Understanding Long-Term Care Coverage: A Detailed Analysis

Barriers to Care: Lack of Long Term Care Coverage Charlene Harrington, Ph.D., RN Professor of Nursing and Sociology University of California San Francisco

How many people need long term services and supports (LTSS)? 13.9 million total: 12.3 million community residents (from the 2016 National Health Interview Survey) and 1.7 million institutional (2010 Census) (S. Kaye, UCSF). Institutional Kaye, Harrington, LaPlante. Health Affairs 2010. Sources: 2005-06 Medical Expenditure Panel Survey & 2004 National Nursing Home Survey

Need for LTSS and Age 0.5 The risk of needing LTSS increases exponentially with age 0.45 0.4 18-34 9% Percent needing help with I/ADL 0.35 35-44 10% 85+ 15% 0.3 0.25 45-54 13% 75-84 24% 0.2 55-64 14% 0.15 65-74 15% 0.1 0.05 65+ = 54% 18-64 = 46% 0 Almost half the population with a need for help is 18-64 years old Age Source: Survey of Income and Program Participation, 2003. US Census Bureau

Medicare program -- for 51 million aged and disabled covers ONLY short-term LTC Nursing home users 1.7 million individuals; 2.5 million admissions (27 days of care average in 2012) Home health users - 3.4 million individuals (34 visits average in 2012) State Medicaid - for 73 million low income people (38 million aged and disabled, 35 mil children) (10 million dual eligibles) covers long-term nursing home, home care, personal care, AT and other) Nursing homes 1.6 million individuals 2011 Home health 1.09 individuals 2011 If not covered, individuals must pay out of pocket and must become poor to receive Medicaid long term care ndividuals must pay out of pocket and must become poor to receive Medicaid long term care https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and- Reports/Archives/MMSS/2013.html

Private long term care insurance - 7.5 million policies (5% of those age 40 plus) ($9 billion in claims was paid in 2012) Annual policy costs - between $2600 for age 55-64 to $5200 for 75+ Private pay costs are high -- annually in 2017 Nursing homes - $97,452 Assisted living - $45,000 Homemaker services - $33,540 K. Ujvari, AARP Public Policy Inst. Aug, 2018; Genworth Financial Inc. 2017

Out pocket Out- -of pocket of- - Private Ins & Other Private Ins & Other Total Total Medicare Medicare Medicaid Medicaid $3,504.3 $3,504.3 Total Personal Health Care Total Personal Health Care Nursing home/Residential care Nursing home/Residential care $174.6 $174.6 24% 24% 40% 40% 27% 27% 9% 9% Home health Home health $102.8 $102.8 41% 41% 41% 41% 8% 8% 10% 10% Other health/personal care Other health/personal care $191.6 $191.6 3% 3% 86% 86% 4% 4% 8% 8% Total LTSS Total LTSS $469.0 $469.0 19% 19% 59% 59% 13% 13% 9% 9% Source: Projected National Health Expenditure Data, CMS 2017 https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and- Reports/NationalHealthExpendData/NationalHealthAccountsProjected.html

Paid help 13% Paid help - - 13% No help 3% No help - - 3% Unpaid help 84% Unpaid help - - 84% Kaye, Harrington, LaPlante Health Affairs 2010

Number & Type of Unpaid Caregivers in the US in 2014 Total 43.5 million (24.4 hrs per week) Worth $470 billion For Children - 8.5% For Children & Adults - 14.9% For Adults -76.5% Source: AARP Inst. For Public Policy & National Caregivers Alliance, Caregiving in the US 2015. https://blog.aarp.org/2015/07/16/family-caregiving-worth-470-billion-a-year-aarp-finds/

15,500 NHs, 67% for 15,500 NHs, 67% for- -profit, 56% chains profit, 56% chains 20% received deficiencies for harm or jeopardy of residents in 2016 20% received deficiencies for harm or jeopardy of residents in 2016 (KFF Nursing facilities 2009 (KFF Nursing facilities 2009- -2016) 2016) 33% of 2.5 million Medicare NH Residents experienced adverse events or temporary harm during their short term SNF stays in 2011 59% of those were preventable 33% of 2.5 million Medicare NH Residents experienced adverse events or temporary harm during their short- - term SNF stays in 2011 59% of those were preventable Over 25% of Medicare nursing home residents were sent back to the hospital for an estimated costs of $14.3 billion US DHHS Office of Inspector General 2014 Reports Over 25% of Medicare nursing home residents were sent back to the hospital for an estimated costs of $14.3 billion for common problems US DHHS Office of Inspector General 2014 Reports for common problems

Figure 2 Growth in Medicaid HCBS Expenditures, by Program, 2002-2012 $55.0B $54.9B $52.7B In billions $50.6B $45.9B $41.5B $37.7B $35.3B $38.5 $32.1B $40.8 $36.7 $34.3 $30.6 $28.2B $27 1915(c) Waivers $25.1B $24.3 $23.3 State Plan Personal Care $20.9 $19 State Plan Home Health $16.9 $10.5 $10.9 $10.2 $10.1 $8.4 $9.5 $8.7 $7.7 $7.1 $6.5 $5.5 $5.8 $5.8 $5.7 $5.4 $5.1 $5 $4.6 $4.3 $4 $2.7 $2.6 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 % Change : +<1% +10% +4% +4% -- +13% +10% +11% +10% +7% +14% NOTE: Figures updated annually and may not correspond with previous reports. SOURCES: KCMU and UCSF analysis of CMS Form 372 data and program surveys.

Figure 9 State Variation in Medicaid HCBS Program Expenditures Per Person Served, 2012 VT WA ME ND MT NH MN OR MA NY WI SD ID MI RI CT WY PA NJ DE IA OH NE IN IL NV MD WV UT VA CO DC MO KY KS CA NC TN SC OK AR AZ National Average = $17,151 NM GA AL MS LA < $10,000 (5 states) TX AK $10,000 - $19,999 (25 states) FL $20,000 - $29,999 (16 states and DC) $30,000 (4 states) HI NOTES: Includes only expenditures in state plan home health and personal care services programs and 1915(c) waivers (not HCBS provided through 1115 demonstration waivers or ACA LTSS options). Arizona, Rhode Island, and Vermont provided all HCBS through 1115 managed care waivers and Hawaii provided HCBS to all non-I/DD beneficiaries via a 1115 waiver. Data for California s Developmentally Disabled 1915(c) waiver were estimated due to a reporting period change. SOURCES: KCMU and UCSF analysis of CMS Form 372 data and program surveys.

Figure 13 Medicaid 1915(c) HCBS Waiver Waiting Lists, by Enrollment Group, 2004-2014 Others Aged/Disabled Persons with Intellectual/Developmental Disabilities 14% 11% 10% 8% 26% 29% 9% 6% 32% 29% 10% 6% 28% 30% 5% 29% 6% 26% 42% 1% 58% 60% 60% 41% 61% 62% 53% 64% 63% 64% 68% 53% 53% 45% 53% 47% 2006 45% 2004 2005 2007 2008 2009 2010 2011 2012 2013 2014 536,464 582,066 331,689 206,427 260,916 280,176 365,553 393,096 523,710 Total: 428,571 511,174 NOTES: Percentages may not sum to 100 percent due to rounding. The Other enrollment group includes waiver enrollees who are people with physical disabilities, children, people with HIV/AIDS, people with mental health needs, and people with traumatic brain and spinal cord injuries. SOURCES: KCMU and UCSF analysis of CMS Form 372 data and program surveys.

Cost control policies on financial eligibility, need criteria, hourly limits, cost limits, geographic limits, waiting lists Fragmentation across many agencies/ programs Medicaid managed care has expanded to integrate services & financing and control LTSS costs Total enrollment in MLTSS programs more than doubled, from 800,000 in 2012 to 1.8 million in 2017 in 24 states. MCOs lack expertise & experience in providing LTSS

Class Act initiated by T. Kennedy 2003 was incorporated into the ACA Established a voluntary national LTC insurance program as part of the ACA Initially estimated to save $80 billion & reduce Medicaid costs because initial 5 yrs would not pay benefits Problems with a voluntary program, potential adverse selection, and high projected costs Withdrawal of White House support & strong Republican opposition Congress repealed the provision Jan 2013 Caldwell & Aging Report, 2014 Caldwell & Bedlin Aging Report, 2014 Bedlin, Public Policy & , Public Policy &

Need comprehensive mandatory public coverage for LTSS preferably through Medicare strong political opposition because of the costs. Other countries have mandatory public LTSS coverage including Canada, Scandinavia, Germany and Japan Some states are proposing LTSS coverage Maine initiative of 3.8% marginal tax on high gross adjusted income CA considering an initiative for a direct cash benefit for LTSS at home CA Collaborative for LTSS WA state working on a design and feasibility study for a public LTSS initiative NY state health act may include LTSS