Personal Impacts of Long-term Care; Coming Up–another view of personal aging care–this time for Tribal Elders

Caring for One or More Aging Parents: Some Personal Stories

Taking initiative, a friend who was caring for several parents–some of whom lived out of town and on both coasts- started a blog so caregivers could share their insights, concerns and offer mutual support.

Not all stories  on her FaceBook page deal with the costs of care, but some do.  Here is one such story:

Most stories are personal from caring for parents with Alzheimer’s disease  to caring for  one parent when the other has died. These stories give a personal voice and face to the very personal issues of aging and caregiving.  These stories reflect the strength, needs and challenges facing our elders and our families.

Her FaceBook page is:

For those who missed the earlier blogs on the two models I discussed they are: community villages:  and  one of its local networks in Seattle

The other is a new care and financing model: They also have a blog on the development of these communities:

There are other models,, such as the one my mother was in, called PACE:   This program is  primarily for low-income elders, but they do accept private pay patients, such as my mother.


Coming next: Tribal Care Long-term Care 

In my last blog I talked about the importance of programs that respect personal goals and wishes as we age.   The Urban Indian Health Service connected me with the head of their program.  Their story will be featured next. Continue reading

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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 Continue reading

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Just In! A Practical Toolkit on Long-term Care for Families; and A Guide to Long-term Care Costs

The bi-partisan Alliance for Health Reform just released its toolkit on Long-term Care.  Funded by the Robert Wood Johnson, the toolkit offers facts, organizations and resources about aging and long-term care services.

Why you need to pay attention: A brief look at long-term care costs:

Coming Next: Community based models:

Continue reading

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What You May Not Know About Medicare Could Hurt You

If You Think Medicare Covers All Aging Needs Think again.

Medicare is Medical Care. It covers physician care, hospital care, post-acute care (care after a hospital stay), such as a skilled nursing facility or home health care for rehabilitation. In all cases, however, there are limits.

1)   Hospice is covered and it now appears doctors will be paid for end of life discussions.

2)   Medicare Advantage plans may cover a few more things than traditional Medicare supplemental plans, such as fitness classes and limited eyeglass and dental care. These plans do not cover long term care whether at home or in a facility.

3)  Part D covers pharmaceutical costs up to a point. With the Affordable Care Act the “donut hole” will be closing, but still cancer drugs and other specialty medications can cost up to  $100,000. You are still responsible for co-pays up to your deductible amount. In Medicare you are generally responsible for 20% of the cost.

4)   Medicare covers certain “assistive” devices, including walkers and some types of wheelchairs, but there are many restrictions about what is available. High co-insurance means you also must pay for a substantial portion yourself.

Medicare does not cover long-term care! It did not cover most of the costs associated with my mother’s care as noted in my previous blog. Nor does it cover non-medical care needed by people with dementia or long-term disabilities.

Overall, long-term care insurance coverage is inadequate. It is expensive and typically covers around three or slightly more years of care and not always at full cost. If you need long term care, and have means, you must spend them (called ‘spend down’). If you don’t have means, there is Medicaid for low-income seniors and there are a few programs available in some communities that help.

“Most people don’t realize what they will face, but there are some positive steps people can take to prevent what can often can be an emotional and personal disaster for the person and the family,” explains Denise Klein, Executive Director, Wider Horizons, in Seattle, WA(, former Executive Director of Senior Services in Seattle for 10 years. She has worked in the fields of aging, health, and long-term care for more than 40 years.

Continue reading

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Aging And Your Family: Finding The Systems that Work

Introduction:   As we gather with family and friends on this celebration of our national independence, let’s think on independence and quality of life as we or our family members age.

Despite harping about the flaws of our health care system I have seen a system work. After my father’s death I became my mother’s caregiver.   I was confident I could manage her care. I had worked in and wrote about health care for nearly 30 years.  I started my health care career in aging and long-term care.  I had been a Medicare HMO marketing director.  I knew it all.  I thought.   Here’s what happened to my family until we found a system that worked:

Continue reading

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A New Direction for O’ConnorReport: ACA “Watch Dog” and new Showcases of Success

The Supreme Court’s decision validates the core of the Affordable Care Act.  Still much more remains to assure safety, quality and value (bang for the buck). To date, I have focused on the systems’ ills. What we heard loud and clear when we at CodeBlueNow! asked  people about the system was: “Show us what It Will Look Like.” 

As we create a new more user friendly, engaging and robust website, I want to do two things:  1) be a watchdog on the system and 2) be a ‘scout’ that showcases the good and the possible.  My concerns and interests are:

  • Mergers and consolidations among insurers, hospital systems and ‘multi-vendors’
  • Increase in for-profit providers especially in home health care, senior residences and hospice
  • Meaningful patient surveys
  • Real Community engagement models for quality and needs assessments
  • Successful replicable models of care, quality measures
  • Accountability at all levels—cost, quality, safety and community engagement

Ezekiel Emanuel, one of the ACA’s architects, voices similar concerns about consolidations and anti-trust in Reinventing American Health Care. 

The Supreme Court decision is a major victory, but there are more than a few big battles/issues ahead.  As a friend said about the system after reading my book:  “Too many cooks in the kitchen.”  So we must remain alert.

That said, there are more and more bright lights as we will see next:

Coming next—a look at a long-term care system that actually worked for my mother and me. Plus some models of hope for frail elders as 10,000 baby boomers a day turn 65 into a system that is not prepared for them……..Yet. Continue reading

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Insurers Consolidate and Merge and A Quick History of Health Care Reform: The Good, the Bad and the Ugly

No matter what the Supreme Court Decides

Much remains to be done.  Insurance is regulated at the state level.  Even if subsidies are approved, more fights remain ahead.

Insurance company consolidation:

“Merger activity is heating up now because the insurers have become tremendously cash-rich,” says Fuller, who studied the balance sheets of several companies this week. “While hospital revenue is improving somewhat,” he says, “the balance of power when negotiating with the merged companies will definitely be in favor of the insurers,” Fuller predicts.  317643/MegaMergers-Among-Health-Insurers-Bode-Ill-for-Hospitals


A short selection from  “A Quick History of Health Care Reform,”  in The Buck Still Stops Nowhere (order now!)   Or, support this independent voice and donate today!  We give you news and tools you won’t find elsewhere! 

A Quick History

Benjamin Franklin starts insurance for fire protection. Insurance
not considered commerce and therefore not subject to federal
• 1752—Benjamin Franklin founds insurance
industry with Philadelphia Contributionship of
Houses from Loss by Fire.

• 1869—in Paul v. Virginia Supreme Court decides “issuing a policy of insurance is not a transaction of commerce.” States have responsibility for taxation and regulation of insurance.

• 1929—1932—Committee on the Costs of
Medical Care formed. A private national
commission created by AMA to examine
ways to control health care costs and prevent
bankruptcies for American families. Failed.

• 1942—1950’s—Wage-price freeze. War Labor
Board rules wage price controls do not apply
to fringe benefits, such as health care. National
Labor Relations Board rules that employee
benefit plans are subject to collective bargaining.
Health care benefits allowed as compensation
during WWII wage /price freeze. Beginning of
health care as a form of employee compensation.
FDR administration.

• 1944—Supreme Court in U.S. v. South-Eastern Underwriters Association decision declares insurance is commerce and therefore subject to federal regulation and oversight.

• 1945—Congress enacts McCarran-Ferguson

Act and gave states continuing authority to
regulate and tax insurance and declared that
state regulation was in best interest of consumer.
Insurance exempt from federal anti-trust laws.
This act over turned the 1944 Supreme Court
Southeastern Underwriters decision that made
insurance regulation subject to federal regulation.

Continue reading

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Non Profit Hospital Profits Double–But There are Tools You Can Use

Non-Profit Hospital ‘profits’ have doubled in the last decade. Don’t give up hope!  There are tools we can use.

1) Non-profit hospitals must report executive compensation to the IRS on Form 990 Schedule J.  Washington state reports their compensation annually. This is public record.  Information can be found for hospitals in other states. See WA State’s report here:

2) The Affordable Care Act requires hospitals to conduct community needs assessments and promote their financial assistance policies.  If they do not comply they face penalties of $50,000. That can be $50,000 per hospital in a larger hospital system.

Hospital boards of trustees are responsible to see their institution complies. This is what non-profit hospitals are required to do to remain tax exempt:

3) The Washington Health Alliance in Washington state produced a series of reports on costs, quality and community check-ups.  Much of their information is public record as well. Public record information, however, is just not easy to find.

Keep reading!

Continue reading

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Did You Know? New Series on Long-term Care. PART I: Medicare Can’t Negotiate Drug Prices—VA and Medicaid Can

The Presidential election season is once again upon us.  The Affordable Care Act deals with some Medicare issues, but some key ones are not addressed. Pharmaceutical costs and long-term care are two of them.  Here is a question you can ask!

Why can’t Medicare negotiate rates with pharmaceutical companies, but Medicaid and the VA can?

A Story: Congressman Billy Tauzin led the Medicare Part D legislation that added prescription drug benefits to Medicare.  Medicare Part D, however, prohibits Medicare from direct rate negotiations with pharmaceutical companies.  It leaves rate negotiation to individual Medicare supplemental insurance policies with less negotiating power and leverage because of their smaller size.

Medicare Part D legislation passed in 2003 and became effective in 2006.  In 2005 Billy Tauzin was named CEO of PhRMA (Pharmaceutical Research and Manufacturers of America) the professional and  lobbying organization for the pharmaceutical industry.  Tauzin led PhRMA from 2005-2010.

As candidates hit the campaign trail ask them why Medicare can’t negotiate   rates, but Medicaid and the VA can?

We need to hold elected officials accountable to our needs, not those of deep pocket donors–be they PAC, corporations or employees of corporations who can make large contributions.


I could use your help! I can’t do all this alone.   I want to start a Kickstarter (crowdfunding) campaign to raise funds to make my website more user friendly, accessible and robust for both my blog, my book and people’s stories. To kick off  a campaign, I need a mock/proto type of the website, a brief video explaining what I intend to do with the website, blog and book.  I have video producer/filmer and the website developer lined up and they can start in July.  If I have funding.  I seek modest support of  $3,000–$4,000 from now through July.  

The campaign will be to create an interactive robust, user friendly website that can post individual stories, new articles, updates and reports and have video capability for people to tell their stories.  It will also highlight and promote elements of the book so it is not something static stuck on a shelf as the winds of health care shift.

Please Donate Today:   I need your support to give you information and tools you can use and won’t find easily elsewhere.   

My heartfelt thanks for your constant encouragement and support.  There is still much to do no matter what the Supreme Court decides this June.


 Story Background Information and Sources: Continue reading

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What Hospital Executive Earn 2014: Linking Compensation, Quality and Accountability

1. Hospital Executive Compensation

The Washington State Department of Health’s annual hospital executive compensation report is being released in May and June as data are assembled.  Executive compensation includes:

  • base compensation
  • bonus and incentive compensation
  • other reportable compensation
  • retirement and deferred compensation
  •  non-taxable benefits

Washington State is the only state that requires such public reporting.   

The state’s information is from the IRS Form 990 Schedule J.  All non-profit hospitals must use the 990 Schedule J in their annual tax filing. This information is public record. Therefore, you can find information about hospitals in your state. 

Continue reading

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