Changing Aging Care: Personal, not Institutional Care–What Can Be Done and What You Can Do; and my new advisory and board appointments

The Limits Of Medicare

“Medicare is great for medical care, but it simply does not cover the support and personal care services that frail elderly people need. The current system cannot support those needs—the way we pay for care is a medical model, not a community based or individual care model.  Such simple community based programs many people depend on, such as Meals on Wheels, have up to an eight month waiting list in some areas,” stresses Joanne Lynn, MD,MA, MS, Director, Altarum Institute’s Center on Elder Care and Advanced Aging. “Our strictly medical care model must change.”

“We know from experience that 30-40 percent of elderly Americans have long-term care needs that are not and cannot be met by the family. Elderly people also retain their personal priorities and goals that should be honored,” says Lynn.

She lists some hard facts about American’s aging and long-term care needs:

  • Nearly half of all Americans have no savings at the time they retire.
  • 40 percent have no immediate family to help with their care as they age.
  • Daily, 10,000 baby boomers are turning 65.
  • There are insufficient public funds for long-term care for all who need it.
  • Most people have insufficient personal savings to pay for such care.
  • People who live to 70 will probably live to 80, with increasing care needs. People who are ninety can live to be 100 or more.
  • The best predictor of increasing care needs and costs is aging.

“Without significant changes in how we pay for and deliver long-term care services, there will not be enough support for aging baby boomers.  Few people are immune from some care needs as they age.  Those few who make the headlines as having robust and healthy lives make headlines simply because they are so rare,” Lynn indicates.  “Non-medical supportive care needs are not covered by Medicare even for such simple things as home modifications or Meals on Wheels, and often wheelchairs.   People who think they won’t need such service should think again. Right now nearly 30 to 40% of all Americans have to ‘spend down’ (eliminate) their assets to pay for their aging care. When you spend down you have no assets. Without assets you have few choices,” she stresses.

If you couple American’s lack of retirement savings with the lack of coverage for non-medical care costs, financial and emotional disaster looms large for many people. Community based care systems, such as the Community Villages discussed in the earlier blog, are one step in the right direction but they still don’t cover many supportive care needs for frail elders.  Lynn believes that those needs can be met by changing the way we organize and pay for care.

Lynn’s conviction is based on research that demonstrates the effectiveness of a community based system that covers personal and supportive care and also respects the wishes of the individual.  “MedicaringTMCommunities” is a model founded on solid research. Lynn is not alone in her convictions. The model has attracted seed funding. Four communities have developed plans to  organize such systems and are in the early implementation stage.  The Center is also sponsoring a petition drive and a non-partisan “Party Platform Initiative” is underway to assure supportive services are available in communities around the country.

The Older Americans Act, which assured community based programs such as Meals on Wheels, home modification and homemaker services, was passed by Congress in 1965. This year the Act was continued by the Senate, but has not yet passed the House.  “But even if the Act is renewed again,” Lynn notes, “Funding has not increased since 1994, nor has the number of people served increased—all this while the aging population has doubled. Funds for supportive services are flat while Medicare funds increase for medical care. Financial support for the personal and supportive services people need has remained flat since 1994,” she stresses.

What Can Be Done

There are many things people can do when programs are based on trust vs political solutions, Lynn believes. She is convinced trust can best be achieved with a community based care model.  “Such systems depend on value. What you value and I value personally, however, often differ.” Lynn indicates, “A true high quality system must try to match the priority needs and preferences of each elder.  This is not an impossible dream.”

“What Medicare does not address is reliable supportive services that preserve a family’s financial assets yet meets individual needs. Medicaring™ Communities builds on a structure much like Accountable Care Organizations (ACOs). Unlike the ACO model, it includes support services that are not currently covered.  Savings from unnecessary and costly medical care can be used to cover these supportive care costs. Similar programs have existed since the 1980’s, such as PACE programs, but they have been underfunded and restrained by regulations With community based programs that are both publicly and privately financed, communities can offer the range of services people need” Lynn stresses.

“Caregivers play a critical role in advocating for such care,” she says.  Already, caregiving groups, such as Caregivers Corps are initiating planks in state and national political platforms to create a balanced care system with both supportive and medical care,” Lynn adds.

There are private components to this model as well,” she indicates.  “Long-term care costs can be covered if people start something like a Health Savings Account for long-term care.  Combined with public funding, such savings will cover the cost of most care for most people.”

Lynn believes the greatest need for public policy is to ‘cover the tail’ or end stage care needs for people who live a long time with substantial personal care needs. This piece is currently missing.  She believes a combination of social insurance and private insurance can meet these needs. This public/private combination represents compatible goals of safety, personal choice and independence.  Simply relying on public programs, such as Medicaid, is not feasible as many caregivers, legislators and governors agree.  Medicaid is the fastest growing part of state budgets. It drains money from other essential programs, such as public education and transportation.

What You Can Do

Medicare is moving toward paying for value rather than quantity and its fee for service financing model.   The new Consideration for Improving Medicare Post-Acute Care Act focuses on the quality of care and outcomes.  “Most people want a workable plan that covers daily care and supportive needs. They want to control their care, have spiritual support and have a reliable supportive system that will not deplete all the family’s assets. Right now, Lynn indicates, Medicare has no method to judge the match between what a patient needs and wants with the services provided by Medicare and Medicaid.  A high quality delivery system must match those personal needs and priorities,” she says.

The Center’s goal now is to have more communities build Medicaring™ Communities. Their track record and organizing is impressive:


What happened with my mother’s care journey did not need to happen. We had some family resources to pay for her care.  I have knowledge of the health care system, but entering the long-term care was foreign territory, even when I started my health care career in aging and long-term care.  Ask any caregiver or family member caring for aging parents and you will hear stories about the costs, gaps, holes and often unspeakable inadequacies of our eldercare system.  There are viable alternatives which is one reason I have devoted so much space to this important issue.  You should devote time now as well for your sake and your family’s.

Kathleen O’Connor© July 21, 2015


New and renewed appointments:

  • Board of Directors, Foundation for Health Care Quality, Seattle  and its Patient and Family Advisory Council
  • Continuing member, National Coalition on Health Care, Washington DC,






About Kathleen

Kathleen O’Connor: 30+ year health care consumer advocate, non-profit executive and author. For more information about Kathleen, please see "About" on the main content bar above.
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3 Responses to Changing Aging Care: Personal, not Institutional Care–What Can Be Done and What You Can Do; and my new advisory and board appointments

  1. Larry Jacobson says:

    Hi Kathleen:
    I have been working in senior care management much of the past six years. I’d like to discuss this further with you if you are inclined. Best for me are weekends or evenings,

  2. Theo Kostelecky says:

    Those of us whom has worked 30+years in the health (home care) system, and go to work every day with a smile knowing you must make there day as pleasant and joyful as possible, like most this is all they have to look forward to.

    Then when you think of yourself, no insurance, must pay your own taxes, live pay check to pay check. One illness for us could and has bankrupt me once and may happen again.

    This sickle is never ending and scares me nearly every day thinking one pay check will end my life as well as the sick whom I am trying to help. The riches country on earth is a joke. It’s only for the riches people, not the country or the people that have made it great. Sad but very true.

    Still there!!!

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