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Advisory Council November 2020 Meeting Presentation: Expanding Access to LTSS

Tuesday, November 10, 2020

Printer Friendly Version in PDF Format (5 PDF pages)


Expanding Access to LTSS for People Living with ADRD and their Caregivers

Debra L Cherry, PhD
Executive VP, Alzheimer's Los Angeles and Chairperson, NAPA LTSS Subcommittee

Long Term Care Needs

  • Levels of LTSS
    • Individual
    • Family
    • Community
    • Residential
  • Caregivers
    • Identify and document
    • Assess needs and levels of stress
    • Engage in person and family-centered care planning, consistent with "person's" wishes
    • Provide disease education and support that is culturally and literacy-level appropriate
    • Connect to community-based resources

Gaps and Barriers to Access

  • Workforce
  • Service delivery
  • Affordability
  • For socio-economically, racially and ethnically diverse populations

Who pays for LTSS?

  • Public Sources Outweigh Private
    • Medicare
    • Medicaid
    • LTC Insurance
    • Other (Managed Care and Unions)
    • Out of Pocket Costs
Pie Chart: Other 16%; Out of Pocket 13%; Private Insurance 9%; Medicare 19%; Medicaid 43%.
SOURCE: Health Affairs, 2017; : National Health Expenditures Data, 2015. Centers for Medicare and Medicaid Services.

How expensive are LTSS?

  • These costs can impoverish a middle-class family.
    • The average retirement savings for baby boomers is about $75,000 while the cost of providing LTSS is significant. In 2017, the average annual cost of a community-based adult day-care center was $16,900; a home health aide was $49,000; and the cost to live in a nursing facility was $97,455.
      American Medical Assn., 2018

Who pays for LTSS?

  • For Lower Income Families, Medicaid Spending on LTSS and the Available Benefits Vary by State
Figure 4. The Proportion of Medicaid Long-Term Services and Supports Spending For Home and Community-Based Services Varies by State, 2013
State Map: 2 states less than or equal to 30%; 14 states 31%; 16 states 41%; 10 states and DC greater than or equal to 50%.
SOURCE: Urban Institute estimates based on data from CMS Form 64 as of September 2014.
NOTE: All spending includes state and federal expenditures. HCBS expenditures include state plan home health services, state plan personal care, targeted case management, hospice, home and community-based care for the functionally-disabled elderly, and services provided under HCBS waivers. Expenditures do not include administrative costs, accounting adjustments, or expenditures in the U.S. territories.
* Spending for AZ, DE, HI, NC, NM, RI, TN, and VT is not shown due to their funding authority for HCBS and/or the way spending is reported.

Impact of COVID-19 on LTSS for People Living with ADRD and their Caregivers

  • Individuals, Families and Providers are Challenged
    • "In England and Wales, 25% of those who died from the virus had dementia"
      The Economist, August 3, 2020
    • "At least 15,000 more Americans have died in recent months from Alzheimer's disease and dementia than otherwise would have ..."
      The Wall Street Journal, June 28, 2020
    • Most adult day centers are closed
    • Many families fear bringing a worker into the home
    • Many services are offered online, but are not accessible to all

Learning from the Past to Inform Future NAPA Recommendations

  • Venoreen Browne-Boatswain -- Lived experience
  • Gretchen Alkema -- Where we've been
  • Panel: Where states are now and suggestions for the future
    • Moderated by Carrie Molke
    • Speakers: Marc Cohn, Center for Consumer Engagement in Healthcare Innovation
      Martha Roherty, Advancing States
      Kitty Purrington, National Academy for State Health Policy
      Jenn Rosen, Alzheimer's Association
  • Vignettes: Effective ACL-funded models for increasing access to HCBS for ethnically diverse groups
    • Moderated by Maria Ordonez
    • Featuring: Madeline Michel, Haitian Memory Cafe
      Constantina Mizis, Promotores de Salud
  • Gretchen Alkema -- Future directions and recommended strategies