A Patient Advocate's View

Same Old Mis-Dis-information and lies

President Obama has written a letter to plead his case for keeping the Affordable Care Act in tact. The Dems continue to say that the Republicans don’t have a plan for replacement, however that is not strictly true. They do want to keep the pieces of legislation that are popular, like children staying on the parents plans and coverage for pre-existing conditions, and maybe even subsidies for low-income workers. But, other than that, the main idea they have is to do away with the mandates on employers and individuals. That is the popular idea that got Trump elected. However, their plan for accomplishing all this is to keep it in the hands of the insurance companies. Here’s where both party’s plans will always fail. To put it into a nutshell, here is the great Don McCanne of Physicians for a National Health Plan.
Comment by Don McCanne
The negative consequences of repealing the Affordable Care Act without replacing it with measures that address some of the problems that ACA was designed to fix have been well publicized. President Obama is right to warn us about repealing ACA without replacing it. But the full story is more complex.
Although the Republicans are moving ahead with including repeal of ACA in the budget reconciliation process, we do not have any details about what is being repealed nor when the repeal would actually take place, if ever. And the Republicans have no clue as to what their replacement would be, especially since it is obvious that their favored proposals such as health savings accounts and selling insurance across state borders would not effectively address the deficiencies that would be recreated by repeal.
Of greater concern, President Obama’s warning about repealing without replacement misses the bigger picture. ACA only tweaked our dysfunctional financing system when we needed comprehensive reform.
Obama touts ACA measures that supposedly saved money by replacing quantity with quality, but, in fact, such measures have not had even a negligible impact on overall cost containment. What they have done is to increase administrative complexity and waste, resulting in an epidemic of physician burnout.
He touts the increase in the numbers of individuals insured, but ignores the deterioration in quality of the coverage through the increase in financial barriers to care, especially high deductibles, and the impaired access that is resulting from expanded use of ever narrower provider networks.
He expresses regret that guaranteeing coverage to individuals with preexisting disorders requires a very unpopular individual mandate to purchase insurance (to prevent adverse selection), and yet he remains silent on the fact that social insurance programs such as Medicare are extremely popular and they rely on automatic coverage instead on an individual decision on whether or not to comply with a mandate.
He repeats the tag line that he used when he rejected single payer reform: we need to “build on what works and fix what does not.” Yet ACA patched only a few problems but did not begin to address the major deficiencies of our health care financing infrastructure, especially those resulting in profound administrative waste. ACA provided tweaks when we needed a new infrastructure.
And then – Primum non nocere – First do no harm. A system in which people are suffering, going broke, and sometimes even dying, is a system which is doing great harm. Reform should not be slogan driven. It should be built on what really does work to actually reduce harm. A single payer national health program – improved Medicare for all – does precisely that.

January 6, 2017 Posted by | Uncategorized | Leave a comment

Repeal and Replace, but for what?

Everyone’s heard the news about problems with the Affordable Care Act and Obamacare. Hillary says expand it and Trump says Repeal and Replace. The NY Times article this weekend is a great example of how misinformation and disinformation is still alive and well. Thanks to Physicians for a National Health Plan’s Senior Health Policy Fellow Don McCanne, M.D, we are sharing this analysis of the article, so that you can reply, when you are told, “I read it in the paper.”
The New York Times
October 27, 2016
The Best Way to Save Obamacare
By Jacob S. Hacker
The Affordable Care Act has faced a rocky six months. First, major national insurers scaled back their participation, leaving about one in five people buying coverage through health exchanges with only one plan to choose from. Then this week, the Obama administration announced that exchange plans would post an average premium increase of more than 20 percent (though most enrollees would be insulated from the full increase by subsidies for their coverage).
As someone involved in the debate over the Affordable Care Act from the start, I don’t find these unhappy events all that surprising. From the outset, I’ve argued that without a public option — a Medicare-like plan that would be available to all Americans buying health insurance — insurance competition would dwindle and premiums would skyrocket. Now that they have, it’s time to do now what we should have done then: take the simplest route to a more stable and affordable health care system.
Critics of the public option are convinced it’s a one-way ticket to single payer (the government alone provides coverage). History suggests the opposite: The public option isn’t a threat to a system of broad coverage through competing private plans. Instead, it’s absolutely critical to making such a system work.
We’re already heading toward single payer in sections of the nation — only it’s a private plan doing the paying. Next year, five states will have only one insurer in their exchanges, the online marketplaces set up to allow uninsured Americans to buy subsidized coverage. Nine more states will have just two insurers.
The diminishing number of choices doesn’t just hurt consumers; it also makes it harder for regulators to use antitrust tools to push back against this consolidation. Who wants to be the official accused of causing an insurer to leave the exchanges? It’s a perverse equation: As the number of insurers goes down, the leverage they have over regulators goes up.
These problems are what motivated proposals for a public option in the first place. Major parts of the country lacked enough insurer competition to keep costs in line, especially with rapidly consolidating providers. And the proposed alternatives to a public option, like the insurance “co-ops” eventually included in the 2010 law, did not have the bargaining power and reach that a Medicare-like plan would have (and most of them have since gone out of business).
The argument by public-option supporters wasn’t that it would or should replace private insurance. It was that having a public plan as a benchmark and backup was essential to make competition among private plans work. The models we have of successful competing health plans have a public or quasi-public option. That’s true in Medicare, where private plans operate alongside the traditional program. And it’s true in the federal employees’ health system, where a majority of enrollees choose Blue Cross-style nonprofit plans that are overseen by the government to ensure they remain viable.
Having a public plan alongside private plans won’t merely ensure that everyone has a choice. It will also pull more people into the system, creating a broader pool for all the plans. In polls conducted in 2009 and 2010, substantial majorities of Americans said they would feel better about being required to have coverage if they had the choice of a public plan.
A public plan is attractive in part because it can offer a broader network of providers. As exchange plans increasingly move toward very narrow networks, this would be another enormous draw — especially for more affluent consumers who have so far shunned the exchanges.
The public plan can also improve the overall system. Medicare has pioneered innovations in reimbursement, and it has improved hospital quality by imposing new penalties for readmissions. A public option could build on these breakthroughs and extend them to Americans under Medicare age.
The biggest advantage of the public plan, however, is its greater ability to restrain prices. As rapidly as the insurance market is concentrating, medical providers are consolidating faster, driving up prices and creating huge differentials even within regions. Medicare hospital reimbursements vary much less — and they’re typically much lower. As a result, Medicare has experienced slower per-person cost growth than private plans, particularly in recent years.
On the other hand, private plans are much better poised to develop integrated systems that closely monitor outcomes for a smaller circle of providers. Just as in Medicare, public and private plans can complement each other as they compete.
The public option is an ambitious policy. But it’s not hard to explain or advocate for — Americans love Medicare — and it has the potential to build powerful grass-roots support. Pressure from a coalition of left-leaning groups led by the Progressive Change Campaign Committee (a group that fought for the public option in 2009) has encouraged 33 Senate Democrats, including the party’s leadership, to call for a public option. President Obama has started advocating for it again, and Hillary Clinton has embraced it.
Republicans have actually shown how it can be done. Changes in Medicare pushed by President George W. Bush in the 2000s created more competition between public and private plans and guaranteed a fallback public option for prescription drug coverage.
This year, Senate Republicans, providing another lesson, passed legislation that repealed the Affordable Care Act through the budget process, which isn’t subject to a filibuster. (President Obama vetoed it.) If that’s possible under the budget rules, creating a public option should be, too — especially since it could reduce the deficit by tens of billions of dollars a year.
If things keep going as they are, Americans are certain to demand greater regulation of private plans to make them operate more like public plans. Instead, we should make them compete with a public option.
Jacob S. Hacker, a professor of political science and director of the Institution for Social and Policy Studies at Yale, is an author of “American Amnesia: How the War on Government Led Us to Forget What Made America Prosper.”
Comment by Don McCanne
Jacob Hacker deeply believes in a better America for all of us. As a political scientist, he understands the difficulties of moving the process in that direction. During the health care reform process, he recognized the lack of political feasibility of enacting a single payer Medicare for all program, but, with good reason, he decided that a public option – offering the option to purchase Medicare instead of private insurance – was feasible. In fact, it almost happened. Since so many problems still exist six years after enactment of the Affordable Care Act (ACA), we should listen to Jacob Hacker to see what he has to recommend.
First, let’s go back and look at the process that led up to ACA. The dysfunction in our system had become unbearable – runaway costs, too many uninsured and underinsured, preventable financial hardship and physical suffering continued – something had to be done. The policy and political communities understood the superiority of single payer Medicare for all, but the politics were polarized. It was decided that the feasible approach would be for the Democrats, who were in control, to lead by supporting the Republican proposal of building on the existing system. Although the progressive community initially was disappointed, they decided that the only feasible approach was to join the (ACA) bandwagon, especially when it included the public option that many thought would eventually transform into a single payer system once the public realized how much better government insurance was compared to private insurance. Although the process emasculated the public option, one Senator was able to block it altogether.
Fast forward to today. After six years, the feasible approach has not turned out so well. Yes, many more now are covered, but little realized how much insurers could still innovate, for their own benefit, in a more regulated environment. To make premiums affordable, plans had to be offered with a lower actuarial value – accomplished by increasing the deductibles and offering credits and subsidies for lower income individuals (which left middle income individuals more exposed to medical debt). But many did not realize the rapidity and intensity with which the insurers would jack up the deductibles. And now the policy of high deductibles is corrupting the part of the market they were trying to protect – the employer-sponsored plans. Also they wanted to protect the “gains” of managed care, which really is not much more than negotiating lower rates for provider panels in exchange for granting them exclusivity. Once again, most did not anticipate the rapid move to ultra-narrow networks that serve the insurers so well while impairing access for their enrollees. Higher deductibles and narrow networks can hardly be described as successes of ACA since most people are worse off.
So now we are again facing the same political dilemma. Do we embark on a process to establish single payer Medicare for all, or do we take the politically feasible route of enacting a public option which would fix our system by requiring private insurers to complete with a vastly superior public plan, or so they would have us believe? Well, the decision has already been made. The progressive community is already totally on board with the public option. The tragedy is not so much that on this path we will end up with a public plan that will be only one more feeble player in the dysfunctional market of private plans, but rather that we will, once again, have walked away from single payer, perhaps for decades, because of this meme about lack of political feasibility.
So let’s look more closely at what Jacob Hacker has to offer in his truly sincere effort to cure our health care system.
*  From the outset, I’ve argued that without a public option — a Medicare-like plan that would be available to all Americans buying health insurance — insurance competition would dwindle and premiums would skyrocket.
The insurance industry’s control of Congress would prevent a public option that could out-compete the private plans. Our traditional Medicare program is already being out-competed by the private Medicare Advantage plans because Congress has continued to support policies that give the private plans an unfair advantage while rejecting measures that would provide the much-needed expansions in the currently deficient package of Medicare benefits. That’s why Medicare must be improved before we consider it as a program for all of us.
*  Critics of the public option are convinced it’s a one-way ticket to single payer (the government alone provides coverage). History suggests the opposite.
Currently we are being inundated with threats from the conservatives that if we enact a public option it will lead to the left’s dream of a single payer system. Yet the progressives have jumped on board precisely because they believe a public option will lead to their dream of a single payer system. Yet Hacker now says that history suggests the opposite. He says that the public option is not a threat to a system of competing private plans. Will the progressives really be satisfied with perpetuation of the current dysfunctional system as long as the few who buy their plans through the exchanges will be able to choose a feeble public option?
*  We’re already heading toward single payer in sections of the nation — only it’s a private plan doing the paying. Next year, five states will have only one insurer in their exchanges.
Yes, so many plans have pulled out that there is only one private insurer left in many of the exchanges. But it is sad to see Hacker characterize these lonely private plans as single payer when the highly dysfunctional multi-payer system remains in place. He understands the single payer model better than most, yet his passion for the public option model drives him to play rhetorical games that glibly dismiss the true meaning of single payer (though he may actually be threatening the conservatives with this bastardized form of “single payer”).
*  The diminishing number of choices doesn’t just hurt consumers; it also makes it harder for regulators to use antitrust tools to push back against this consolidation.
Politicians and the policy community are fixated on market competition as a means of controlling costs, yet Nobel laureate Kenneth Arrow half a century ago explained to us how markets do not work in health care. The United States has relied more on markets than other nations and we have the highest costs that has only brought us mediocrity. A publicly administered single payer system is much more effective at controlling costs throughout the system.
*  A public plan is attractive in part because it can offer a broader network of providers.
Can it? Since the public option is just another player in a market of private plans, it would be funded by premiums rather than taxes. As the provider panels are increased the premiums would have to be increased since they can no longer offer exclusivity, making the public option less competitive, not to mention that broader panels would be attractive to patients with greater needs. Death spiral?
*  Medicare has pioneered innovations in reimbursement, and it has improved hospital quality by imposing new penalties for readmissions. A public option could build on these breakthroughs and extend them to Americans under Medicare age.
Current Medicare innovations such as ACOs, MACRA, MIPS, and APMs have not proven to be very effective and are causing grief amongst the health care professionals. Besides, private insurers also adopt Medicare innovations, but only those that have been proven to be effective.
*  The biggest advantage of the public plan, however, is its greater ability to restrain prices.
If the differential between public and private prices is too great, providers will reject the public programs in favor of the private. Many physicians will not accept Medicaid payments because of the low payment rates, especially specialists. Having a ticket to a public option is not very helpful if there is no one there to care for you.
*  Pressure from a coalition of left-leaning groups led by the Progressive Change Campaign Committee (a group that fought for the public option in 2009) has encouraged 33 Senate Democrats, including the party’s leadership, to call for a public option. President Obama has started advocating for it again, and Hillary Clinton has embraced it.
Point made on the contention that the progressives are jumping on board.
*  This year, Senate Republicans, providing another lesson, passed legislation that repealed the Affordable Care Act through the budget process, which isn’t subject to a filibuster. (President Obama vetoed it.) If that’s possible under the budget rules, creating a public option should be, too.
If a public option can pass only by squeaking it through in the reconciliation process, that doesn’t say much for expecting broad support in a divided Congress and a divided nation.
*  If things keep going as they are, Americans are certain to demand greater regulation of private plans to make them operate more like public plans. Instead, we should make them compete with a public option.
Uwe Reinhardt has frequently said that a system of competing private plans – like they have in Switzerland – can work if they are very heavily regulated. Yet an OECD/WHO report on the Swiss system revealed that they still have many of the problems that we have in the United States. So keeping private plans in the system is still a problem. Instead of making them compete with a public option, we should get rid of them and establish our own single public plan.
Feasible? Is it really better to just give up and perpetuate uninsurance, underinsurance, high costs, high deductibles, narrow networks, inequities, financial hardships, impaired access, and more physical suffering and even deaths? What’s not feasible about trading all that in for a system that works?
PNHP’s Senior Health Policy Fellow Don McCanne, M.D. writes a daily health policy update, taking an excerpt or quote from a health care news story or analysis on the Internet and commenting on its significance to the single-payer health care reform movement.

October 31, 2016 Posted by | Uncategorized | 2 Comments

Can you teach a new dog old tricks?

June went by in a blur of activity for GetHealthHelp. Here are some of the things that kept us busy.

A new puppy came into our 91 year old client’s life. She saw a picture petitewithboneof a Maltese who had inherited a million dollars in the paper. That very day, she called all over town to find out where she could get one. When I came to take her to the new pain doctor’s appointment, she said “Let’s forget the doctor today. I want this dog and I found out where to get one!” Well,  I never tell someone who feels better and wants to do something fun, not to do it. So, out we went to bring this little bundle of joy home for the aides to take care of. I’ve had many puppies and I know it takes time to train them while your house gets turned upside down. The client had adopted one other puppy, which she gave up after a month to her maintenance man because the dog was “untrainable.” Now this one, the Maltese, wanted nothing but Love, Love, Love. Yet, after only two weeks, I had the call. “Get this dog out of here! He’s a danger. He’s bitten me and the aide and has a terrible mean streak!” I know when she gets something into her head there is no explaining it otherwise. So, that night I posted to Facebook that I needed help to find a loving home for a lively, untrained puppy. It’s really good to have ‘friends’. Within the hour I had several offers to take the dog. I really lucked out when Walter Ochoa of Right At Home in Brooklyn called to say that his mother in law had recently lost her Yorkie to cancer and was looking for a new dog. Not only did Walter come the next morning to remove the offending monster from my cowering client, but his training program on how to understand clients with dementia came into action as he was able to talk his way into my client’s heart. By the time he left, she had changed her mind about the prospects for the little demon and realized that maybe a puppy hadn’t been the best idea. Maybe an older dog that has been house broken and looking for love would be a better idea.

Thanks again Walter. You can see more about him at

An update on my last post about Community Medicaid: In June, I attended the Vincent Russo 25th Annual Elder Law Conference for Professionals.    Kelly Ann Murray, Esq. of the  New York Legal Assistance Group gave a presentation showing the exact same kind of letter that my client received. It seems that Medicaid has some sort of computer glitch that is responsible for losing this year’s Community Medicaid applications. My client is back in the hospital because he didn’t get the help at home he needed. There’s also another glitch in the system. Since the Medicaid application had to be resubmitted, the patient had to continue to pay for his supplemental Medicare plan and his Part D coverage. According to his Drug Plan, he can only receive the prescriptions that keep him alive from the pharmacy in his neighborhood. He was ready for discharge from the hospital last week, only requiring to continue the antibiotic for the flu he contracted while overdoing it without an aide.  But none of the Rehabilitation facilities could accept him because they couldn’t obtain the prescriptions he needs. Now, not only does he have the bill from his last rehab, he has to pay for private care to be able to come home without any sign of Medicaid services starting any time soon.


July 13, 2016 Posted by | Uncategorized | Leave a comment

Exceptions to the rule

images9VWBAIKZ     I had an interesting issue with Guildnet yesterday, one of the Managed Long Term Care Plans (MLTCP) This is not a case of someone trying to get something for nothing. This patient worked all his life and paid into the system that is supposed to protect him now that he needs help. After a battle with throat cancer, he is cancer-free but the radiation treatments burned his esophagus so that he needs a feeding tube and suffers now from recurring aspiration pneumonias. He also has chronic gerd and has lost so much weight that he can hardly hold himself up.
The patient was being interviewed to determine how many hours he would get for home care services covered by Medicaid through the MLTCP. Everything was going well and the patient was approved for 18 hours a week, which we decided to take as 3 hours 5 days a week. However, when we talked about the feeding tube supplies and oxygen he needed, which were covered by Medicare, a problem came up. His doctor spent months finding a small  oxygen pack that he could carry. He is very frail but not in a wheelchair. Guildnet only contracts with one provider of oxygen.  We already knew that this company only carries the large green “portable” bottles that are made for wheelchairs, not for carrying. The nurse said that she was told to turn people down from the plan if they were not willing to change to a contracted DME provider. I called Ilene Greinsky, Eldercare Resources. I asked her if this could be correct. She advised the nurse to call administration and ask for an exception.  The nurse was hesitant and decided not to continue the enrollment until the problem was solved. Of course we were very disappointed as the patient had been waiting for months to get some help.  I called Paula Goodstein,  Geriatric Resource Consultants, who had prepared the original Medicaid application and had set up the Guildnet meeting. She was able to find out that since the DME provider did not have the item the patient needed, then Medicare would continue to pay for the item and the MLTCP would pay the co-pays.
What a messed up system. After we settled in to look at the mail, I found that two of the patient’s medications were not on the formulary for Silver Scripts, the new Medicaid Drug plan in which he has been automatically enrolled. The patient was given a 30 day emergency supply. Now, his doctor must send supporting documents to show why the patient needs this medication, instead of another similar medication on the formulary, of which there are none.
To top it off, the hospital sent a bill for a visit 6 months ago that they say was rejected by his insurance. A call to them showed that they had sent his claim to the wrong insurer. And last but not least, his stay at the rehab facility after the hospitalization has been denied coverage.  The reason I was referred this case was because the rehab had been notified that the patient was reaching his maximum coverage in a week and needed to be discharged. So, if they had the maximum coverage letter, they must have had the coverage letter for the previous 100 days he was there. Right?

May 18, 2016 Posted by | Uncategorized | Leave a comment

Caregiver Support-Advice for Moving the Talk to Action

By Carol Marak

April 06, 2016.

It’s disheartening to know that the Family and Medical Leave Act have not improved much over the years. Although no comprehensive policy or program to support family caregivers exists today, the pace of dialogue and interest has quickened in the past five years to include them in the deliveries of care. Many companies are expanding leave for maternity and paternity leave. NetFlix gives staff a year! However, moving the talk to action for family caregivers needs a shove.

It’s a universal issue, and I remember the days of helping mom and dad from a distance while holding down a full-time job. For me, family caregiving began in 1999, when mom’s health started to fail. At the time, 1,200 miles lay between us but decided to shorten the distance and moved closer.

Even so, my job kept us apart. My efforts to work a solution with the HR department fell on deaf ears. Back then, I thought she was cold-hearted but now know that her hands were tied. Unfortunately, the same grief rests on families today.

Lynn Friss, a senior strategic policy adviser for the AARP Public Policy Institute, says “Despite some recent policy advances at the federal and state levels, the pace of change must accelerate to recognize adequately and explicitly support caregiving families.” In Lynn’s article, she concludes that their requirements demand solutions, or they risk burnout from extended distress. Friss believes that working caregivers could prevent burnout by providing information, better care coordination, support, and training.

Our country must adapt to the complex needs of caregiving families. We must find ways to address and resolve the significant issues before we lose the “family assistance” to ill health caused by exhaustion. Since our country’s long-term services and supports (LTSS) systems are not set up to meet the needs of family caregivers, how do we help them?

We need real world answers and help. Therefore, I asked the Aging Council Members for their guidance. Since they work in the field and deal with families and older adults every day, no one is more suitable for the query,

“What emerging programs and policies do you see changing to include the family caregivers—and what remains a challenge?”

Care Coordination

It is still a major problem for working caregivers to coordinate for a loved one’s needs, often leading to leaving jobs or cutting back on hours, giving up promotions, etc. We need to examine the cost-benefit as employers and society to paying for some assistance and offering various benefits versus losing valuable workers, time, etc. Alex Chamberlain, Easy Living FL.

Financial Concerns

Caregivers lose large chunks of wealth due to opportunity and actual costs of giving care. Companies are extending EAPs to help and modifying benefits to be more inclusive, but this needs to be addressed on a wider level as it not only impacts individuals but our overall economy. Shannon Martin, Aging Wisely.

If enacted, the Social Security Caregiving Act would provide modest retirement compensation to those who have left the workforce or reduced their hours to care for a loved one, thereby reducing the amount they are paying into Social Security. The credit would ensure the caregiver would not be losing the benefits they would receive upon retirement, presenting more flexibility for these caregivers. Evan Farr, Farr Law Firm.

Family Support

One organization to check is ReAct, a coalition of companies that embrace family caregivers in the workplace. They have benchmark reports that provide best practices. Organizations must realize that great customer experience starts with a great employee experience and with 6 of 10 people in the workforce are family caregivers; taking care of them also helps your business. Anthony Cirillo, The Aging Experience.

Family caregivers are exhausted. Because many caregivers have to leave the workforce to care for aging family members, there are no additional monies left to pay for respite care. Caregivers who DO exit the workforce go without funds, friends and in many cases, the ability to find employment in their area of expertise. Shelley Webb, Transitional Caregiver.

In the realm of private insurance we talk of absenteeism and presenteeism (“there, but not there”) since forecasts call for a “caregiving workforce” as the new normal. Private LTCI– with all its attendant benefits– is expected to make a major push into the worksite in the next few years. In Washington, a trio of public policy advocates has called for greater support for family caregivers. Stephen Forman, CLTC, Long Term Care Associates, Inc.

Employer Options and Strategies

Flexible schedules in the workplace are a life saver for both the employer and employee. Not all positions/companies have the ability to make this work, Scot Cheben, Caregiving Answers. A Metlife study found that:

  • 33% of working women decreased work hours
  • 29% passed up a job promotion, training or assignment
  • 22% took a leave of absence
  • 20% switched from full-time to part-time employment
  • 16% quit their jobs

Caryn Isaacs, Get Health Help, offers the following examples of worthy programs and resources for family caregivers:

Under FMLA, children of aging parents may take up to 12 weeks of unpaid leave annually to care for parents who are experiencing health problems. Unfortunately, many individuals do not meet the FMLA requirements, and even if they do, long-term care needs often exceed the allotted 12 weeks. Many people struggle due to the reduced or absent paychecks when taking leave under FMLA.  Ben Mandelbaum, Senior-Planning.

America is waking up to the fact that family caregiving is costly and pain-FULL. A price tag exists for loss of work and increased healthcare costs for caregivers. Link that to the growing population and you have the perfect storm. Employers with EAPs reap “presenteeism”, cost-savings, and show support and value to employees. More can be done on state level to follow the federal FMLA. Change is driven by pocketbook pain: the government’s, the employer, or Insurance. Nancy Ruffner, NavigateNC.

About Carol Marak 

Carol Marak is a senior and family caregiver advocate. She is the editor for and writes for many online publications offering information on current aging trends and help. She helped publish America has a Major Misconception on Aging, a report to help consumers plan for long-term care.

Carol Marak’s background includes caregiving for her parents and has first-hand experience in helping her father who lived with Alzheimer’s disease. She understands the dilemma family members encounter when caring for a relative and working a full-time job.

Ms. Marak has published more than 200 professional articles for health care websites, blogs and newsletters. She became a full-time freelancer in 2006 and has been interviewed by reporters.

Though senior care is her area of expertise and greatest passion, Carol has written and edited branded content, articles, company profiles and product brochures. Carol has a BS in Behavioral Sciences and Criminology from Sam Houston State University in Texas.

April 7, 2016 Posted by | Uncategorized | Leave a comment

How to get families to talk about estate planning issues

  • 162f4b4f0a8e1d7bf61355795d29a751Carol Marak, Aging Advocate, Editor at, and Columnist. She earned a B.S. in Social Services and a Certificate in the Fundamentals of Gerontology from the University of California Davis, School of Gerontology. Carol is an active member of the American Society on Aging. She publishes aging-related news in the Huffington Post,, Lifehack, ASAging, Love to Know, BlogHer, and SheKnows,, and

    ​Sharing my personal experience and challenges about my family members’ estates and advance directives is the most efficient way to start the conversation. It illustrates that it’s a real issue. I try to de-stigmatize the topic by taking a matter-of-fact approach and providing practical tips, as I did in my book “Juggling Life, Work, and Caregiving. Amy Goyer, Amy Goyer Consultant.

  • Ask: if they’ve had to make life altering decisions for one who is unable to make decisions himself? Who would so this for you; would he know how to based on your expressed wishes? It’s the greatest love letter written to one’s family. Don’t require your family to handle your affairs without any guidance. Let them know how to conclude the legacy story of your life. Rhonda Caudell, Endless Legacy.
  • Use stories: When folks don’t know how to begin sharing a situation on TV or what happened to a neighbor/co-worker, that exposes vulnerability. It sets up the question that enables the conversation. Everyone loves a good plight-story: how others did it, or what they encountered. Tragedy or Triumph, we weigh them. Stories both teach and compel us to turn inward toward our planning. Nancy Ruffner, Navigate NC.

Offer education

  • Most consumers, don’t understand “The Modern Estate Plan” as the threshold for estate taxes is more than $10M for a couple. We need to explain better “property or estate erosion” due to potential healthcare costs which have no minimum threshold. Effectively, this stealth estate tax needs to be addressed, and most advisors fail to help clients understand the impact of healthcare in retirement and LTC planning. Mike Padawer, INERTIA Advisor Services.
  • It’s important to educate clients about all the consequences if they neglect having an estate plan. A primary goal is to avoid probate court. Estate planning enables the client to consider who is most appropriate to handle medical and financial decisions should they become incapacitated. We also provide advice on techniques that can be used to benefit a client’s intended beneficiaries. Ron Webb, Peck Ritchey, LLC.
  • Use TV shows, movies, articles in the paper and experiences of friends and relations to bring up the subject. Play the “what if” game–what if you were hit by a bus and broke your right arm and couldn’t write a check–how would your bills be paid? What if you were in a coma–what would you want me to do to care for you? Let’s all fill out our forms together. Donna Schempp, Family Caregiver Alliance.
  • Let’s face it. Money and death are not the easiest discussions and deserves the greatest level of sensitivity. Depending upon the person, it may be simpler to provide a few books or resources to review. Other times, you can refer them to a specialist or send them documents to fill out directly. Sites like have updated materials to make it easier. Michelle Jeong at LifeAssist.


Use assessments and tools

  • I use an assessment form that asks multiple choice questions. The answers tell me if a person is prepared, or needs assistance to make them or needs help from another person to make decisions for them. I deliver support via personal interviews, in family group settings, and in larger audiences. Caryn Isaacs,
  • I discuss EOL issues through The Conversation Project’s free tools. ( TCP’s Starter Kit is an easy, painless way to open the door about EOL. It is the step before setting up advance directives and thinking about medical interventions and talking with a lawyer. The approach makes you think about what is important to you at the end of life in broad terms. Laurie Miller, AppleCareandCompanion.
  • It is part of our care management assessment process and ongoing work with every client. Community education is also important to create awareness and conversation. So far this year, our owner Elder Law Attorney Linda Chamberlain has talked about “Creating an Exit Strategy” and “The Legal Docs You Must Have” in monthly workshops. Shannon Martin, Aging Wisely

April 6, 2016 Posted by | Uncategorized | Leave a comment

Preparing for the unthinkable.

Carol Marak

by Carol Marak

There is a geriatric population explosion in the United States, and policies for improving care and quality of life for the elderly have come to the forefront. Last year, Medicare modified payments to cover counseling sessions for providers and patients when discussing end-of-life issues. The topic is a sensitive one; having these discussions may lower health care spending. Since 25 percent of Medicare payments apply to the last year of life, these conversations could limit treatment. According to a 2010 Health Services Research study, 63 percent of beneficiaries receive hospital care in the last few months of life.

Public and private hospitals lack the services needed to educate patients regarding palliative care. The new Medicare ruling allows voluntary advance care planning during patients’ annual checkups. The provision aims to forego aggressive life-sustaining treatment and help beneficiaries deal with complex decisions when approaching death.

The National Institutes of Health notes that doctors are trained to maintain health and fight illness and, thus, receive insufficient guidance on how to communicate with dying patients. And since our society is death-averse, it is not surprising that physicians find it difficult to engage in “terminal state” consultations. For them, death is a medical failure. However, advocates of Medicare’s ruling recognize that good communication can dispel fears, minimize pain and suffering, and enable patients and their families to experience a peaceful death.

A few members of the Aging Council offer advice to initiate end-of-life conversations:

Scot Cheben,, encourages doctors and patients to have ongoing group conversations that include a trained gerontologist or social worker.

Kathy Birkett,, sees doctors ideally positioned to have an end-of-life dialogue. Doctors don’t have to know everything but need to get the process started and then help patients complete the journey.

Caryn Isaacs,, remembers a client who refused to change his “destructive” habits until he began dialysis. The patient thought one or two treatments would be the cure. The patient soon learned from his doctor that if he wanted to live longer, he would need to make substantial lifestyle changes. It led to advance directive discussions.

Evan Farr,, says that because physicians fight illness, they need practical educational tools to address fundamental issues concerning death and dying.

Connie Chow,, thinks Medicare support is a step in the right direction. An excellent book is Being Mortal: Medicine and What Matters in the End. Written by Atul Gawande, a surgeon and public health researcher, it illustrates doctors’ reluctance to stop treatment even in terminal cases and their avoidance of discussions about likely outcomes.


Carol Marak is the editor at She earned a Certificate in the Fundamentals of Gerontology from the University of California, Davis. Contact Carol at

April 4, 2016 Posted by | Uncategorized | Leave a comment

Understanding What Makes Americans Dissatisfied With Their Health Care System

Health Affairs
March 2016
Understanding What Makes Americans Dissatisfied With Their Health Care System: An International Comparison
By Joachim O. Hero, Robert J. Blendon, Alan M. Zaslavsky and Andrea L. Campbell
For decades, public satisfaction with the health care system has been lower in the United States than in other high-income countries. To better understand the distinctive nature of US health system satisfaction, we compared the determinants of satisfaction with the health system in the United States to those in seventeen other high-income countries by applying regression decomposition methods to survey data collected in the period 2011–13. We found that concerns related to “accessing most-preferred care” (the extent to which people feel that they can access their top preferences at a time of need) were more important to satisfaction in the United States than in other high-income countries, while the reverse was true for satisfaction with recent interactions with the health system. Differences among US socioeconomic groups in survey responses regarding access to most-preferred care suggest that wide variation in insurance coverage and generosity may play a role in these differences. While reductions in the uninsured population and the movement toward minimum health plan standards could help address some concerns about access to preferred care, our results raise the possibility of public backlash as market forces push plans toward more restricted access and higher cost sharing.
From the Introduction
For at least the past twenty-five years, Americans have been consistently less satisfied than residents of other high-income countries with their own nation’s health system.
In some ways, Americans’ low levels of satisfaction with their health system seem to defy expectations. For example, system satisfaction in European countries has been found to be strongly correlated with per capita expenditures.4 However, this is not the case in the United States, where per capita expenditures are high compared to those in Europe.
In our study we applied, across countries, a measure of relative importance that combined the strength of the relationship between each factor and system satisfaction with the amount that the factor varied. We focused on domains of opinion in which we most expected the United States to differ from other countries, given its unique culture and health care system. These include access barriers, satisfaction with the last health care experience, and the newly defined construct of access to most-preferred care.
From the Study Results
We found that security in accessing most-preferred care was more important in explaining overall satisfaction in the United States than in other countries, whereas satisfaction with recent health care experiences was less important. In particular, confidence in accessing the best care available explained more variance in ratings of system satisfaction in the United States than did satisfaction with a recent hospital or doctor visit — which in most countries was the most important predictor of overall satisfaction.
From the Discussion
For years the Commonwealth Fund has fielded international surveys that use mostly objective measures of patient experience. The surveys have found that the United States underperforms its peers along many dimensions of cost, access, and quality and that Americans are more in favor of major system reform than are people in other countries. In spite of these findings, researchers using the Commonwealth Fund data did not find the desire for system change in the United States to be very sensitive to performance on these measures, even measures of affordability — which leaves the determinants of desire for system change within the United States mostly unexplained. Using a different data source and more subjective measures of personal care and satisfaction, we have taken a new look at potential drivers of satisfaction in the United States and have offered evidence on the ways in which that country differs from its peers.
Comparing results for the United States and international averages, we found that access-related concerns played an outsize role in determining system satisfaction in the United States and that confidence in accessing one’s most-preferred care mattered in particular to Americans. Conversely, satisfaction with recent health care experiences, which tended to be the most consequential to system satisfaction abroad, mattered less in the United States.
One possible explanation for the dominance of access-related beliefs over experiences with care in the United States is the structure of the health insurance system. In other high-income countries, where access to health care is more uniform and minimum standards guarantee that most people receive health care of a certain quality, access to one’s top choices may be perceived as less pressing, and recent individual experiences in the health system become more salient. The wide range of insurance coverage in the United States creates more significant gaps in the kinds of care that individuals can obtain, compared to those in other high-income countries.
This explanation is consistent with research that shows deep concerns in the United States over insurance-related economic security. Wider variation in and less certainty about coverage in the United States compared to other countries may therefore explain the greater importance of access to most-preferred care and the diminished importance of recent health care experiences.
These expectations are not a matter of simply having insurance; they are also related to the type of insurance held. The patchwork of public and private sources of insurance and the wide variation in insurance generosity in the private market create large differences in the comprehensiveness of coverage among the insured. It is perhaps because of this that access to most-preferred care remained the top predictor of system satisfaction, even among Americans with insurance.
From the Policy Implications
Our research found that the concept of access to most-preferred care is particularly salient to Americans’ satisfaction with the US health care system. This research also underscores the important role that variation in insurance coverage and type in the United States may play in system satisfaction, in part through that variation’s role in giving people security about being able to exercise health care preferences when needed. Therefore, reductions in the uninsured population resulting from the ACA may marginally improve system satisfaction.
Overall gains could be limited, however, since the reductions affect only a small segment of the population, and the types of insurance that people are acquiring tend to be less generous and more restrictive than what has been available through employers. Broader improvements in satisfaction will likely require addressing the concerns of the insured as well as those of the uninsured, and the importance of Americans’ access to their top preferences indicates that this may involve issues of network adequacy and treatment availability.
From the Conclusion
Our findings raise particularly troubling questions about the implications of health care equity as it relates to variation in the types of health insurance that Americans can obtain. Changes in insurance that threaten to widen the gaps in access to and perceived quality of care between more and less privileged Americans may serve to increase the number of people who feel that their health care preferences are out of reach.
Comment by Don McCanne
Even though we spend more on health care than any other high-income nation, we are less satisfied with our health care system. This study indicates that the leading reason (that happens to be unique to the United States) is the concern we have about uncertainties in being able to access our most preferred care, that is, the extent to which people feel that they can access their top health care preferences at a time of need.
Wide gaps in insurance coverage, high out-of-pocket expenses, and fragmentation in insurance and delivery systems seem to be the major factors contributing to this uncertainty.
Current trends are to further restrict access through narrower networks, and to impose ever higher cost sharing, especially through higher deductibles, while perpetuating the fragmentation of our financing system. That can only increase uncertainties about our ability to access our preferred care.
Let’s hope that the inevitable backlash will send the message that we are ready for a more equitable and effective system – an improved Medicare for all with free choice of care for everyone. Americans need to be assured that the financing system does not create barriers that impair access to their top health care preferences at a time of need.

March 10, 2016 Posted by | Uncategorized | Leave a comment

How Caregivers Can Save Time and Reduce Stress

I was quoted in this article:

January 5, 2016 Posted by | Uncategorized | Leave a comment

WHCOA: 5 months later, Experts report in

Carol Marak Headshot

Experts know that older adults rely on good health to remain independent and productive but by the measure of medical diagnoses, baby boomers are sicker than their predecessors. The NCOA confirms 92 percent of older adults over 65 live with one chronic condition, more than two-thirds (77 percent) have at least two, and about 15 percent have at least six long-term ailments. The sickest account for more than $324 billion spent on traditional Medicare.

Knowing the massive numbers of sick people, financing long-term care might be unsustainable. But why didn’t the conference tackle the problem of paying for long-term care since it’s the most unstable factor eating into our retirement security? A new federal brief found that half of Americans who reach age 65 will experience severe functional needs and will pay $138,000 out of pocket for care.

The White House has access to such figures — so, why was it missed?

But that wasn’t the only one. There were a lot overlooked. Topics like the future of aging, transforming nursing homes, dementia support, and tapping the vast knowledge of older adults — all ignored. And since expert panels who could give meaningful answers to the critical issues were not included, asked prominent aging leaders to share their perspectives of what SHOULD have been discussed:

In your experience of reading about (or participating in live webinars during) the White House Conference on Aging, name one aging opportunity the conference missed?

More focus placed on retirement security, prevention of elder financial exploitation including abuse, and long-term services and supports. Evan Farr, Farr Law Firm — Strengthening Social Security and finding ways to protect pensions and Medicare not covered nearly enough. Also, the agenda overlooks our diversified older population (including ethnic, non-white, and LGBT elders).

WHCOA missed creating solutions not just revealing problems for caregivers trying to meet needs of aging carees. Kathy Birkett, Senior Care Corner — Can we give tax incentives for adult caregivers working while caregiving? How can spouses pay for items not covered by Medicare-homecare, training, co-pay, dental care, hearing aids? It would also have been helpful to have a real forum for caregivers to voice their concerns during WHCOA.

The main complaint I hear from patients is not getting to see a doctor. Caryn Isaacs, Get Health Help — The change from doctors to Physician assistants and nurses doing doctors work, the changing role of the physician to a paper pusher. I asked this question at a conference and was told that the plan was to phase out doctors.

Caregiver health and well-being isn’t covered sufficiently and that mirrors society in general. Anthony Cirillo, The Aging Experience — Family caregivers in the workforce is another important issue that needs to be discussed. A recent report looking at hospital chief experience officers and their role found a glaring lack of initiatives and priorities focused on caregiver burnout.

We need to combat Ageism. Michelle Jeong, Reminder Rosie — We need to combat Ageism directly to tap into the wisdom and experience of those over 65.

Respite for caregivers. Nancy Wurtzel, Dating Dementia — I’d like to have heard more concrete details about how to provide respite for caregivers. Respite care is discussed, but the reality is that there are not enough free or affordable programs for those of advanced age or those living with Alzheimer’s. This has to change as we are facing a rapidly aging population and it will take people and money to make this happen.

A look at senior living community regulations and how they hinder/help could be beneficial. Michelle Seitzer, — It seemed to be quite comprehensive in its scope. But perhaps a look at senior living community regulations and how they hinder/help could be beneficial, particularly as the new generation of senior living residents is already changing what these communities look like and what services they provide.

The opportunity to advance LGBT senior rights was one topic sorely overlooked. David Mordehi, Advise and Protect — Great strides were made this year in marriage equality laws; however, with Congress not funding the conference on aging in 2015, many believe the opportunity to advance LGBT senior rights was one topic sorely overlooked. Unless addressed, this populace of elders will continue to suffer discrimination when it comes to housing and healthcare.

The glaring need: to increase the frequency of the conference Nancy Ruffner, Navigate NC — It needs to rise in the frequency due to the swelling of our aging demographic and include more topics. Sure, we further engagement with watch parties and online access. We may even connect the consumer to visionary and to spur action. The rub for me and many is: one day, in 10 years time, and four topics?

Society’s stigma against aging and caregiving. Connie Chow, DailyCaring — Caregivers are isolated and feel alone in their struggles. How can they get support unless they can speak openly about their experiences and needs? Today, one in eight Americans are caregivers, so why isn’t caring for seniors discussed and supported like caring for children is?

Endorsing penalty-free and tax-free withdrawals from qualified accounts to pay for long-term care or LTC insurance. Stephen Forman, Long Term Care Associates, Inc. — This year’s WHCOA generated nearly 20 large-scale initiatives on topics ranging from aging-in-place to fall prevention. And while the White House took steps to encourage better retirement planning (via the 401(k), myRA and TSP programs), it stopped just short of that missed opportunity.

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December 16, 2015 Posted by | Uncategorized | Leave a comment