Helping Your Caregiver To Do Their Best

Develop a range of strategies so the care receiver feels supported, not challenged

by Barry J. Jacobs, AARP, January 2, 2019 

Home caregiver comforting senior man sitting at kitchen table

GETTY IMAGES

During my caregiving years, my mother and I had many tense moments about rousing her from bed to get ready for medical appointments. I’d pop into her bedroom and wake her, then remind her a few minutes later that she really needed to get up, then cajole her, plead with her, and ultimately use my sternest, I-mean-business tone. I thought I was helping motivate her in those instances. She’d say she felt like I was bullying her.

I never liked being called a bully and denied it was so. After all, we were always in a rush. If I pressured her, I reasoned, then it was for her own good. But in retrospect now, 20 months after her death, I wonder if I was in the right. What really mattered to her during those times? Was she clinging to the comfort of her pillow because she was still tired or even depressed? Was it more important for her to have control over her own life and sleep in than submit to another routine exam with a doctor who couldn’t help her much anyway? Instead, I overruled her and expected her to “obey” me. 

I don’t think I’m the only family caregiver to transgress the blurry line between supportive guidance and arm-twisting. Sometimes when tired or frustrated or impatient — or when there really is a situation of dire urgency — many caregivers are prone to pressure care receivers too hard to conform to schedules and regimens. We rationalize the approach we’ve taken on the basis of practicality and expedience. But many of us second-guess ourselves later about whether it was necessary.


AARP Care Guide: Help for common caregiving conflicts


Certain things do have to get done. Otherwise, family caregivers might feel that they are guilty of irresponsibility and neglect. But how can we manage to be coaches, not bosses, and effective motivators, not feared bullies? Here are some ideas.

Rarely put tasks over the relationship: There are few caregiving tasks so crucial that they warrant trampling a care receiver’s feelings in the process of accomplishing them. Rather, there are what I think of as front- and back-burner issues. On the front burner are mostly issues having to do with safety, such as taking medications appropriately or driving capably, for which the caregiver should be firm and persuasive. However, most other issues are on the back burner of importance and need for action. For these items, caregivers should allow care receivers to exercise as much choice as possible and shift plans accordingly. That means being more flexible and accommodating, as well as respectful. In retrospect I could have scheduled my mother’s doctor’s appointments later in the day, even if it was less convenient for me, or canceled them altogether.

Develop a range of approaches and strategies: Great coaches are attuned to the moods of their players and apply the right touches at the right time to encourage maximum effort and performance. Great caregivers, too, can sense what care receivers are feeling at a given moment and tailor their requests — for instance, appealing to reason, resorting to silly humor or changing the subject entirely — to the approach that will motivate.  In general, I found that a gentler style was more apt to work with my mother, but there were also times that she wouldn’t agree with me at all. That’s when I would turn to my wife, who, with a smile and an even softer tone, could somehow win my mother’s cooperation making the same request she’d already rejected from me.

Solicit and heed feedback: We can sometimes get so wrapped up in the hectic pace of caregiving life that we lose a sense of how we are coming across to others. But we can listen to feedback from family members about how we are conducting ourselves. Take a moment to say to the care receiver, “We are having to work together more closely nowadays than we ever have before. Am I treating you the way you want to be treated?” Regard the answer seriously.

Beware of creeping bullying: No caregiver sets out to be the sort who pushes others around. But if he finds that applying pressure to the care receiver is the most efficient way of completing his many tasks, then he may slowly tend toward using sheer force. Caregiving isn’t about efficiency, however; it’s about caring. And nothing could be less caring than bending people to one’s will. We need to be aware of the excesses of our own styles and never convince ourselves that the ends justify the means.

Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of the book AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter @drbarryjacobs and on Facebook.

More Caregiving Advice

Getting Paid To Care For Elderly Family Members

You can be paid for your work and treated fairly

by Barry J. Jacobs, AARP, January 30, 2019 |

Son explaining medicine dosage to his elderly mother

GETTY IMAGES

Does money change everything, as the old saying goes? If Alicia had won the lottery, then she might understand why her siblings were now treating her a little differently. But all she’d done was become certified as a home health aide so she could receive a modest hourly wage from her county for dressing, grooming and feeding her Parkinson’s disease-stricken mom. Nowadays, however, her sisters seemed less interested in pitching in with caregiving tasks since family caregiving had officially become her “job.” Even her mother seemed to be asking more of her, as if she were now the hired help and not her youngest daughter.

More states are allowing care recipients to hire and pay family members as their home health aides under what is sometimes called consumer-directed care. These are popular programs for obvious reasons: Family members — some of whom had to quit or cut back on work to take care of a loved one — are now being paid at least a little money for all the care they provide. No one is getting rich, but at least they are better able to cover some bills. More importantly, receiving an hourly wage gives them a feeling of being publicly acknowledged and valued rather than (as is too often the case) feeling invisible and underappreciated.

In my clinical practice, I’ve also worked with many families in which a parent’s decision to leave a house or the bulk of an inheritance to the primary caregiver roils family dynamics like nothing else. The caregiver who will receive money becomes immediately suspected by others of playing the Altruistic Child to cash in. Anger and conflict frequently result.


Caregiver’s guide for dealing with common caregiving conflicts


How can family caregivers earn some compensation for their devoted efforts but not be regarded as mercenaries by other family members? Here are some ideas:

Demonstrate transparency: Many of us are inclined to keep our financial affairs private, even when among family members. But because caregiving is inherently a family enterprise, it is vital that we are aboveboard about monetary transactions, especially if we are profiting in some way from a parent’s need for assistance. Let other family members know about the opportunity to earn an hourly wage for providing hands-on care. Tell them exactly what you’ll make. Communicate plainly that this money is going to offset costs incurred by caregiving activities — e.g., expenses for medication copays, lost salary, the price of fuel for driving to the doctor.

Keep in mind what others think is fair: It may seem fair to you to receive money for the many sacrifices you are making on behalf of someone you love. (I agree with you.) But there are other family members who may believe they are also making sacrifices — though, admittedly, not as many as you are — and deserve to be compensated to some degree as well. For them, it may seem patently unfair that you get glory and money and they get neither. Don’t begrudge or disagree with their feelings. Empathize with them instead and tell them that you greatly value their participation in caregiving. You don’t have to fork over some of your newly earned cash to prove that. Just express your appreciation that the two of you are part of a cohesive caregiving team whose sole mission is to help Mom.

Preserve your parent-child relationship: Care recipients can become increasingly demanding over time even when money is not involved. But when a family member has been hired for a caregiving job, there is a greater tendency for the care recipient to treat even close relatives with impatience and barked orders. Even when you’re on duty, though, you’re not just an employee. Complete the necessary tasks but let your parent know that you’re there for love, not money, and that you expect that your personal rapport with one another is not going to be suddenly altered by changed economics.

Weigh the money’s worth: For some families, receiving a caregiving salary will be an unmitigated boon about which everyone is thrilled. For others, there will be no end to the resentment, jealousy and sniping. Judge for yourself whether working as a loved one’s home health aide is worth it. If it isn’t, then don’t be resentful in kind. Instead, be consoled that peace in the family may ultimately be of greater value than any amount of money in the pocket.

More on Caregiving Compensation

Why Our Prescription Drugs Cost So Much

Nothing stops drug companies from charging the highest price the market will bear

AARP 2018

Why Drugs cost so much

SAM KAPLAN

En español | PRESCRIPTION DRUG PRICES in America are among the highest in the world. On the campaign trail, President Trump said drug companies were “getting away with murder.” Is that true? Or are these firms the beneficiaries of a system that turns a blind eye to excessive profit-making at the expense of society?

In this report, we explain in simple, clear terms why drugs cost what they do. We also examine the drug-price debate in Washington, explain how the complicated business of medicine works and give you ways to save money at the pharmacy.

AARP stands by your side to help lower drug costs and make sure all Americans over 50 have affordable access to the medicine they need to live their fullest lives. — Robert Love, editor in chief


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For Susan Goodreds,Repatha has been as close as you can get to a miracle drug. The 74-year-old resident of Delray Beach, Fla., has a hereditary disorder that causes dangerously high cholesterol levels. Without medicine, her “bad” cholesterol count was in the 300s; statin drugsbrought the count to about 220. With Repatha, it has fallen to 35. 

The catch is, simply, cost. Repatha, a new medicine that made headlines in March when a large-scale study confirmed some of its beneficial effects, costs $14,000 annually, or nearly $1,200 for each month’s injection. Even with insurance, Goodreds pays $4,650 a year for it. Add in other prescription drugs and medical costs, and her yearly health bill is $13,500 — equal to most of her fixed income. “I’m faced with some hard decisions about whether to stay on the drug,” Goodreds says. “I still have a lot of things I want to do with my life.”


If you are concerned about the high cost of drugs, let your member of Congress know by calling 844-453-9952 toll free.


Confusion, anxiety and anger over the high cost of medicine has been on the rise for more than a decade. But even as the chorus of criticism has grown louder, the price of pharmaceutical products in the U.S. continues to skyrocket.

Consider:

  • The cost of Bavencio, a new cancer drug approved in March, is about $156,000 a year per patient.
  • A new muscular dystrophy drug came on the market late last year for an eye-popping price of $300,000 annually.
  • In 2016, the FDA appproved Tecentriq, a new bladder cancer treatment that costs $12,500 a month, or $150,000 a year. 
  • Even older drugs that have long been on the market are not immune: The cost of insulin tripled between 2002 and 2013, despite no notable changes in the formulation or manufacturing process. And the four-decade-old EpiPen, a lifesaving allergy medication, has seen a price hike of 500 percent since 2007. Public outrage this past winter over its price tag ($609 for a package of two injectors) helped to speed up the arrival of lower-cost generic variations to the market.

The issue of high drug prices came up frequently in the recent election cycle, and in a speech in Kentucky in March, President Trump called drug prices “outrageous.” Increasingly, Americans are asking the same question of pharmaceutical companies: Why? 


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VIDEO: Cancer patient Heather Block says Congress needs to protect seniors and all taxpayers from price gouging by big drug companies.  


The Ways of Drug Pricing

“The simple answer is because there’s nothing stopping them,” says Leigh Purvis, director of health services research for the AARP Public Policy Institute. 

AARP Membership: Join or Renew for Just $16 a Year

Other countries drive a much harder bargain with drug companies. In contrast, the U.S. allows drug companies to pretty much set their own prices. 

And as we all know, when demand is high for a product, companies often raise prices. That’s exactly the case for many prescription drugs.

Tens of millions of Americans suffer from conditions like high cholesterol, high blood pressure and diabetes, all of which can be treated successfully with prescription medications.

More recently, drugmakers have developed game-changing therapies for a host of serious illnesses, including multiple sclerosis, hepatitis C and several cancers. That means people are living longer lives.

The supply of a newer medicine, however, is controlled entirely by the drug manufacturer that holds the patent rights. That gives the manufacturer a monopoly on the drug for the 20-year life of the patent. During that time, it is free to raise the price as frequently and as much as the market will bear. An example: Last February, the price of Evzio, an auto-injected drug that is used to treat opioid overdose, jumped to over $4,000 — from just $690 in 2014 — just as demand for the medicine was quickly rising. 

You may not realize the high cost of medicine if you’re relatively healthy and have insurance to cover those occasional needs for, say, a week’s course of antibiotics. But if you or someone in your family develops a chronic or serious condition, prepare for sticker shock — even if you have insurance. 

The profits

When Janet Huston was diagnosed with a rare stomach cancer in 2009, surgery seemed to offer a cure. But a year later the cancer — called gastrointestinal stromal tumor or GIST — returned with a vengeance. The 66-year-old retired lawyer is now taking an arsenal of drugs, including Gleevec, to contain her tumor and control its symptoms. But the medicines that allow her to lead “a somewhat normal life” cost her more than $17,000 a year, including about $12,000 for Gleevec.

“That’s about 30 percent of my total income,” says Huston, who lives in Des Moines, Iowa, on Social Security and a modest pension from her years as an attorney. “I don’t always take my medication as I should, especially in the months when income taxes and property taxes come due,” she admits. 

It’s not just people like Huston who suffer financially. “High prescription drug prices affect everyone,” Purvis says. “Even if patients are fortunate enough to have good health care coverage, higher prices translate into higher out-of-pocket costs, premiums and deductibles. And greater spending by taxpayer-funded programs like Medicare and Medicaid are eventually passed along to all Americans in the form of higher taxes, cuts to public programs or both.” 

Put even more simply: One reason that your health insurance rates are high is because you are subsidizing other people’s high-cost medicines. For example, imagine the euphoria if a company developed a breakthrough treatment for Alzheimer’s disease. Let’s say it costs $60,000 a year per patient, and it gets prescribed to every American with the disease. To pay for the medicine,  insurance premiums for each privately insured person in the U.S. would increase by more than $140 per month, based on a new calculator developed by the Biotechnology Innovation Organization. 

The Drug Cost Debate at a glance 2

AMY SHROADS

A Contorted Marketplace

If you needed a new TV, you would do some research, shop around and pick the best model at the price you can afford. That creates competition that pushes prices down. The market for prescription drugs doesn’t work that way. For example, you don’t make the product choice — your health care provider does. And doctors and nurse practitioners often do so in the dark: There’s little information available to compare one drug to another. The Food and Drug Administration (FDA) does not require drug companies to prove that their new products are better than existing products. So many physicians write prescriptions for the drugs they’re most familiar with — and that information often comes from manufacturers themselves. Drug companies spend $24 billion a year marketing to health care professionals. 

Other factors that cause the drug market to be skewed include:

Patent law. Pharmaceutical companies have become adept at coming up with strategies to extend their monopoly on a drug beyond the expiration of its original patent. For example, they can seek approval for a “new” product that is a slight variation on the original, such as extended release formulations, or by creating therapies that combine two existing drugs into one pill. “The longer that a drug company is able to maintain its monopoly, the longer it can continue to charge whatever it wants for its product,” Purvis says.

Limits on Medicare. One of the largest purchasers of prescription drugs, Medicare is blocked by law from negotiating prices. When Congress was debating the law that created Medicare Part D (which took effect in 2006), lobbyists from the pharmaceutical industry convinced legislators that giving Medicare negotiating power would amount to price control. 

Compare Medicare with the Veterans Health Administration (VHA), the part of the Department of Veterans Affairs that handles medical care. The VHA does have the ability to negotiate drug prices. As a result, it pays 80 percent less for brand name drugs than Medicare Part D pays, according to a 2015 report by Carleton University in Ottawa, Ontario, and Public Citizen, a public advocacy group. The VHA gets its negotiating power from its formulary, a list of prescription drugs that it will cover. Medicare and Medicaid, by contrast, are required to cover almost all drugs approved by the FDA, regardless of whether a cheaper, equally effective drug is available.   

Mutiple middlemen. When you pick up a drug at the pharmacy, you often don’t know what its real price is — that is established between the manufacturer and your insurer. You just pay the agreed-upon copay rate. Today, insurance companies rarely negotiate prices directly with drug manufacturers. Instead, most insurers work with pharmacy benefit managers, who negotiate rebates and discounts on the company’s behalf — often in exchange for preferential placement on their list of covered medicines. Pharmacy benefit managers add yet another participant to what is already a complex system.

The Drug Cost Debate at a glance 1

AMY SHROADS

The R&D Explanation

The pharmaceutical industry offers several responses to the charges of excessively high prices. First, it notes that prescription drugs account for just 10 percent of  the nation’s health care costs; by comparison, 32 percent of costs go to hospital care, according to a 2016 report from Medicare.

It also notes that an open market means that “patients in the U.S. can access the most innovative treatments far earlier than any other country,” says Robert Zirkelbach, executive vice president at the Pharmaceutical Research and Manufacturers of America (PhRMA), the industry trade group. For example, data from PhRMA show that patients in Europe wait an average of nearly two years longer to get access to cancer medicines than American patients. 

But the industry’s primary defense of rising medicine prices are the high costs associated with drug development. 

Drug companies spend over 10 years and up to $2.6 billion bringing a drug to market, according to a 2016 Journal of Health Economics article based on research by the Tufts Center for the Study of Drug Development (which gets a minority of its operating funds from the pharmaceutical industry). Of that amount, $1.4 billion is actual costs — items like salaries, labs, clinical-
trial expenses and manufacturing. The remaining $1.2 billion is “capital costs”: what the company sacrifices by investing time and money in an unproven drug. Some experts dispute these numbers, saying they overstate the true costs.

Even after accounting for their research investments, however, drug companies are among the most profitable public businesses in America. And an analysis from the research company Global Data revealed that 9 out of 10 big pharmaceutical companies spend more on marketing than on research. Most of them also have big budgets for lobbyists to ensure the laws continue to work in their favor. The Center for Responsive Politics puts the number of pharmaceutical industry lobbyists at 804 in 2016.

Further, some drug companies are moving away from doing all of their research in-house and instead are buying smaller companies with promising products. About 70 percent of industry sales come from drugs that originated in small companies, up from 30 percent in 1990, according to a Boston Consulting Group survey. 

In addition, drug companies increasingly focus on products that can generate the highest profits. The majority of drugs approved by the FDA are now expensive specialty drugs. Many drug companies are also pursuing “orphan drugs” — medicines targeting diseases that afflict fewer than 200,000 people. These medications cost an average of $140,000 a year. The catch: Many orphan drugs eventually receive additional approvals as a treatment for other conditions, dramatically increasing the market for the drug. 

The government supports orphan drug development with tax breaks and other incentives. In 2016, the pharmaceutical industry netted $1.76 billion in orphan drug tax credits.

“People are concerned about drug prices; more are being forced to make trade-offs between paying for their drugs and for food or rent”— Leigh Purvis, director of health services research for the AARP Public Policy Institute

Meanwhile, just five of the top 50 drug companies are spending money on much-needed new antibiotics — largely because these drugs aren’t lucrative, the AARP Bulletin reported in November 2016. “In most cases, people only need to take an antibiotic for a couple of weeks to get rid of an infection. Compare that to medications for chronic conditions — which people go on taking every day for years — and you can understand why drugmakers aren’t particularly interested,” says Erik Gordon, a professor at the University of Michigan Ross School of Business.  

There is nothing illegal with any of this: As publicly owned corporations, pharmaceutical firms focus on their bottom line. “Pharmaceutical executives say they have to be more aggressive to satisfy Wall Street,” says John Rother, executive director of the Campaign for Sustainable Rx Pricing.

But there’s evidence that drug companies will respond if pressured to lower prices. One example is patient-assistance programs. Kristin Agar, a 65-year-old clinical social worker in Little Rock, Ark., was diagnosed with lupus in 2009. Her doctor prescribed Benlysta, the only medication specifically approved for lupus. Her insurer would pay 80 percent, about $2,500 per infusion, but Agar had to pay the remaining $450 per dose.

“I couldn’t afford that,” says the self-employed professional. But when she applied for assistance, she was told she made too much money. “That just infuriated me,” she says. Agar appealed the decision — and got her copay covered by the drugmaker for two years. 

But a consensus is building that more must occur. “People are concerned about drug prices; more are being forced to make trade-offs between paying for their drugs and for food or rent,” says AARP’s Purvis. “The trends that we’re seeing are simply unsustainable.”

There is nothing illegal with any of this: As publicly owned corporations, pharmaceutical firms focus on their bottom line. “Pharmaceutical executives say they have to be more aggressive to satisfy Wall Street,” says John Rother, executive director of the Campaign for Sustainable Rx Pricing.

But there’s evidence that drug companies will respond if pressured to lower prices. One example is patient-assistance programs. Kristin Agar, a 65-year-old clinical social worker in Little Rock, Ark., was diagnosed with lupus in 2009. Her doctor prescribed Benlysta, the only medication specifically approved for lupus. Her insurer would pay 80 percent, about $2,500 per infusion, but Agar had to pay the remaining $450 per dose.

“I couldn’t afford that,” says the self-employed professional. But when she applied for assistance, she was told she made too much money. “That just infuriated me,” she says. Agar appealed the decision — and got her copay covered by the drugmaker for two years. 

But a consensus is building that more must occur. “People are concerned about drug prices; more are being forced to make trade-offs between paying for their drugs and for food or rent,” says AARP’s Purvis. “The trends that we’re seeing are simply unsustainable.”

These Common Drugs Increase Risk of Dementia

Disease can occur up to 20 years after exposur

Pills in cups

Incidences of dementia were found up to 20 years after exposure to a class of common drugs called anticholinergics.

En español | A common class of drugs known as anticholinergics, used to treat a number of illnesses such as depression and Parkinson’s disease, may also increase a patient’s risk of dementia by 30 percent, according to a new study published in the British Medical Journal. Anticholinergic drugs are also used to treat gastrointestinal disorders, urinary incontinence, epilepsy and allergies. It is estimated that 20 to 50 percent of Americans 65 and older take at least one anticholinergic medication

The research team analyzed more than 27 million prescriptions, as recorded in the medical records of 40,770 patients ages 65 to 99 who were diagnosed with dementia, and compared them with the records of 283,933 older adults without dementia. The researchers found greater incidences of dementia among patients prescribed anticholinergic antidepressants, urological medications and Parkinson’s disease medications than among older adults who were not prescribed these drugs. These incidences of dementia were found up to 20 years after exposure to the drugs. It was noted that anticholinergic drugs used for gastrointestinal and cardiovascular issues such as asthma are not associated with later incidences of dementia.   

“Many people use anticholinergic drugs at some point in their lives, and many are prescribed to manage chronic conditions leading to potentially long exposures,” researchers stated. “Clinicians should continue to be vigilant with respect to the use of anticholinergic drugs and should consider the risk of long-term cognitive effects, as well as short-term effects, associated with specific drug classes when performing their risk-benefit analysis.”

Heart Association Raises Its Blood Pressure Guideline

46 percent of U.S. adults are now considered to have hypertension

by William E. Gibson, AARP, November 14, 2017 | Comments: 9

Blood Pressure Standard

PETER DAZELEY/GETTY IMAGES

The AHA’s new guideline is designed to encourage people to take earlier steps to control their blood pressure.

Under a newly released scientific guideline, nearly half of American adults could be considered at risk of major health problems because of high blood pressure, the American Heart Association reported on Monday.

Blood pressure readings of 130 as the top number or 80 as the bottom number now are considered to be high. High readings had been defined as 140/90.

Applying the new standard, 46 percent of American adults have high blood pressure, far more than the 32 percent under the previous definition. A reading of less than 120/80 still will be considered normal, but levels at or above that will be classified as “elevated.”

The AHA’s new guideline is designed to encourage people to take earlier steps to control their blood pressure, a major risk factor for heart disease and stroke, the leading causes of death.

“Yes, we will label more people hypertensive and give more medication, but we will save lives and money by preventing more strokes, cardiovascular events and kidney failure,” said Kenneth Jamerson, professor of internal medicine and a hypertension specialist at the University of Michigan Health System. He is among 21 experts on the guideline-writing committee, the AHA said.

“If you are going to put money into the health care system,” Jamerson said, “it’s to everyone’s advantage if we treat and prevent on this side of it, in early treatment.”

Congress… keep the Senior People 1st!

Americans oppose efforts to increase prescription drug costs for seniors

Man looking at pills

GETTY IMAGES

En español | The giant pharmaceutical lobby is pressing Congress to roll back a recent budget deal provision that gives some financial relief to millions of Medicare beneficiaries with high prescription drug costs.

The deal that federal lawmakers passed in February is supposed to help lower prescription drug costs for older Americans by requiring that brand-name drug companies pick up more of the cost of their medicines for beneficiaries who are in the Part D “donut hole.”

Medicare Part D enrollees find themselves in the donut hole when their total spending on medicines reaches a certain threshold, which had been set at $3,820 for 2019. Once a beneficiary reaches that limit, he or she enters the donut hole, where they pay 25 percent of costs for brand-name drugs and 37 percent of the cost of generics. Beneficiaries continue to pay this share until their out-of-pocket spending reaches $5,100. Once they hit that limit, they exit the coverage gap and enter catastrophic coverage, where they pay no more than 5 percent of their drug costs for the rest of the year.

The coverage gap was scheduled to close in 2020, but under the bipartisan budget deal, that is supposed to happen in 2019. In addition, Congress required brand-name drug manufacturers to pay more of the cost of their medicines for beneficiaries in the donut hole. Currently, these drugmakers pay 50 percent of the cost of their brand-name drugs for enrollees in the gap. Under the budget law, starting in 2019 they are supposed to pay 70 percent. The higher discounts would help lower drug costs for seniors, reducing the amount they have to pay out of pocket to reach catastrophic coverage.

The pharmaceutical industry has been trying to overturn the agreement since it was passed and has been lobbying lawmakers in both parties. A recent ad from the drug lobby claims the budget deal “threatens” Medicare’s “successful competitive structure.”

But AARP and other advocates for affordable drug prices say the Pharmaceutical Research and Manufacturers of America (PhRMA) is trying to get Congress to overturn the donut hole deal for increased profit.

“Big drug companies want to boost their profits by raising Medicare drug costs,” says Nancy LeaMond, AARP executive vice president and chief advocacy and engagement officer. “Seniors have worked hard and paid into Medicare their whole lives. It would be shameful to raise their costs when so many are struggling.” This is yet another way, AARP officials say, that drug companies want to increase profits while forcing American consumers to continue paying the highest drug prices in the world.

The pharmaceutical industry is now targeting the lame duck session of Congress in its efforts to break the donut hole deal. Lawmakers have to pass a budget bill by Dec. 7 to prevent a partial shutdown of the federal government. A spokesman for House Democratic leader Nancy Pelosi told Axios, “Republicans are just desperate to get their multibillion-dollar giveaway to Big Pharma done before a Democratic majority takes over the House” in January.

AARP members across the country are reaching out to Congress and the president to demand that they stand by the donut hole deal and their constituents. In last week’s midterm elections, 56 percent of those who voted were over age 50. Throughout the campaign, health care  — especially the cost of prescription drugs — was cited as a key concern among those voters

Rude hiring tactics from Home Health Care Companies

Home Care Companies Increase Use of Noncompetes, Other Contract Restrictions

By Bailey Bryant | December 2, 2018

For decades, companies have used noncompete clauses to retain top executives and protect trade secrets. But now, similar agreements are becoming more common among low-wage home care workers, which experts say can be a double-edged sword.

As the caregiver shortage continues and the demand for home care increases, restrictive agreements will only become more common, according to Angelo Spinola, a shareholder and attorney who represents home care companies at international labor and employment law firm Littler Mendelson.

“You’re going to have lots of companies [with] lots of clients and a great pipeline of work,” he told HHCN. “The issue [they’ll] have is that they don’t have enough of a labor force to satisfy their client demands, so you’re going to see noncompetes, nonsolicits and direct hire provisions.”

Currently, the latter two options are most common among Spinola’s clients. When presented to caregivers, nonsolicit agreements usually allow them to work for competitors but restrict workers from taking clients or employees with them. Meanwhile, direct-hire provisions are client agreements that require customers to pay the company a fee, usually $5,000 to $10,000, if they hire an agency caregiver directly.

Without that fee, companies are out the money and time spent vetting and matching the caregiver, as well as processing the customer.

As such, Spinola recommends all home care agencies use direct-hire provisions. Otherwise, customers can cut out companies and hire caregivers directly with no recourse.

“The client says ‘I no longer need your services,’ the caregiver resigns, and then later [the company] finds out the client and caregiver are working together,” Spinola told HHCN. “If there was an agency fee of $6 an hour, the client may have said to the caregiver, ‘I’ll pay you an additional $3 an hour and keep the other $3, and we won’t use the agency for anything.’ ”

Companies without direct-hire provisions often come to Spinola’s firm after being burned. But when contractual direct-hire terms are clear from the get-go, agencies have fewer problems, Spinola said. Many direct-hire agreements also include an attorney fee, in the event companies must litigate.

Nonsolicit agreements are another way companies can also protect agency assets without restricting workers’ mobility.

“I think that’s probably the most common trend, with the idea being that the agency is trying to protect the client relationship,” Spinola told HHCN. It prevents caregivers from “being introduced to the relationship and then taking that relationship either independent or to another agency.”

If agreements are violated, caregivers receive cease-and-desist types of letters followed sometimes by requests for damages, which must be proven by the agency.

The problem with noncompetes

While nonsolicits are appropriate at the caregiver level, noncompete agreements, which prevent employees from working for competitors within a certain time frame and region after they leave a job, should be reserved for high-ranking employees with access to critical and confidential trade secrets, Spinola told.

A report by the U.S. Treasury backs up his opinion.Noncompete agreements can “protect trade secrets, reduce labor turnover, impose costs on competing firms, and improve employer leverage in future negotiations with workers,” the report says. But for low-wage workers without access to trade secrets, noncompete agreements reduce employees’ leverage in wage negotiations and offer fewer opportunities for career advancement, it explains.

“Our concern is that noncompete agreements could force workers more and more into poverty because they would have fewer options,” said Robert Espinoza, vice president of policy at PHI, an advocacy group for direct care workers. “When direct care workers make $11 an hour and many providers don’t offer full-time hours to give workers a decent living standard, these workers often have no other choice but to seek other jobs to bolster their incomes.”

Rather than retain talent, he worries noncompete agreements could prevent workers from entering the home care industry altogether.

“Why would they enter the sector?” Espinoza said. “That’s especially troubling in a time in which providers are increasingly struggling with recruitment and retention challenges.”

Such struggles are the very reason restrictive agreements, such as direct-hire provisions, nonsolicit agreements and noncompetes, will become more common in the years to come, according to Spinola.

Don’t Miss this New NAHC Film to Celebrate Home Care!

The National Association for Home Care & Hospice (NAHC) has produced a new film to help celebrate Home Care and Hospice Month by shining a light on the nurses who do whatever is necessary to bring the best health care into the homes of their patients. You will see real nurses deliver care and real patients talk about the difference home care has made in their lives. Watch the film below.

The best states for people aged 55 and older

Age-Friendly States Movement Gains Steam

By Bailey Bryant | November 20, 2018

New York, Massachusetts and Colorado are pioneering what could become a new trend: age-friendly states. All three received age-friendly state designations from AARP within the past year.

The movement could be good news for home care providers, if it means that states invest more in systems and infrastructure to enable aging in place and community-based services.

Achieving an “age-friendly” designation doesn’t necessarily mean these states are the best place to grow old — but if they keep their word and execute on plans to be more age-friendly, they will be. More than a designation, this is an enrollment program, Danielle Arigoni, director of livable communities at AARP, told Forbes.

“It’s a commitment to growing in an age-friendly way, not a certification that we stamp and then you’re done,” she told the magazine.

New York Governor Andrew Cuomo made that commitment last week. On Nov. 14, he issued an executive order to “improve health and well-being of New Yorkers across the lifespan.”

In addition to a commitment from the governor, which includes assessments and action plans, states requesting an age-friendly designation must also complete an application. New Hampshire, Rhode Island, New Jersey, Tennessee, North Carolina and Oregon may soon follow suit, according to Forbes.

Depending on location, implementation of initiatives looks different, even within states. To best serve older people, different areas within age-friendly states can adopt different policies and programs while drawing on each other for resources and expertise. For example, in Massachusetts, state leaders researched older residents’ wants and needs by conducting listening sessions across the state.

There is no one-size-fits all and that becoming age-friend is partially about combating ageism, Alice Bonner, Secretary of Massachusetts’ Executive Office of Elder Affairs, told Forbes. Broadly, the goal of AARP’s designation program is to get more groups to cater to older people, from recreation to transportation to employment. Now, age-friendly states hope to lead the charge.

“We need to figure out how to care for one another as we get older,” Bonner told the magazine. “This is not about somebody else; a bunch of 90-year-old people over there. This is about you — however old you are — and it’s about us.”

Written by Bailey Bryant

Making Medicars Advantage Plans harder for Seniors to find.

Trumpeted New Medicare Advantage Benefits Will Be Hard For Seniors To Find

By Guest Contributor | November 12, 2018

Home Health Care News Perspective: With certain non-skilled in-home care services allowable under the Medicare Advantage program in 2019, the home care industry has made landing partnerships with health plans a top priority. But significant opportunities may not arise until 2020, experts predict. Just 3% of MA plans will next year offer in-home support services such as personal care and housekeeping, according AARP. A new report from Kaiser Health News sheds further light on the topic.


By Susan Jaffe, originally for Kaiser Health News

For some older adults, private Medicare Advantage plans next year will offer a host of new benefits, such as transportation to medical appointments, home-delivered meals, wheelchair ramps, bathroom grab bars or air conditioners for asthma sufferers.

But the new benefits will not be widely available, and they won’t be easy to find.

Of the 3,700 plans across the country next year, only 273 in 21 states will offer at least one. About 7 percent of Advantage members — 1.5 million people — will have access, Medicare officials estimate.

That means even for the savviest shoppers it will be a challenge to figure out which plans offer the new benefits and who qualifies for them.

Medicare officials have touted the expansion as historic and an innovative way to keep seniors healthy and independent. Despite that enthusiasm, a full listing of the new services is not available on the web-based “Medicare Plan Finder,” the government tool used by beneficiaries, counselors and insurance agents to sort through dozens of plan options.

Even if people sign up for those plans, they won’t all be eligible for all the benefits. Advantage members will need a recommendation from a health care provider in the plan’s network. Then they may need to have a certain chronic health problem, a recent hospitalization or meet other eligibility requirements.

Medicare counselors from California to Maine say key details are not included on the government’s website. In some cases, if insurers offer the new benefits, the plan finder “will indicate ‘yes’ or ‘no,’” said Georgia Gerdes a health care choices specialist at AgeOptions, the Area Agency on Aging in Oak Park, Ill., outside Chicago. That’s hardly enough, she said.

“There is a lot of information on the plan finder, but there is a lot of information missing that requires beneficiaries to do more research,” said Deb McFarland, Medicare services program supervisor at the Southern Maine Agency on Aging.

Nonetheless, officials say the added benefits will help Advantage members prevent costly hospitalizations. Federal approval of additional benefits is “one of the most significant changes made to the Medicare program,” Seema Verma, the head of the Centers for Medicare & Medicaid Services, told an insurers’ meeting last month. She said she expects plans to expand services in coming years.

Medicare Advantage plans, which are an alternative to traditional Medicare, serve 21 million beneficiaries and limit their out-of-pocket expenses. But they also restrict members to a network of doctors, hospitals and other medical providers. They often offer benefits not available in traditional Medicare, such as dental and vision care, hearing aids and gym memberships.

The federal government pays a set amount to the plans to help cover the cost of each member. The Trump administration gave insurers more money to spend on benefits next year — an average pay raise of 3.4 percent, seven times more than the rate of increase in 2018.

Enrollment is underway for Medicare Advantage plans, as well as for people in traditional Medicare who want to buy a policy for drug coverage. The deadline for choosing either type of plan is Dec. 7.

Among the new benefits that some Medicare Advantage plans said they will offer are:

— trips to the pharmacy or fitness center in addition to doctor’s appointments for plan members, depending on where they live or their health conditions

— a monthly or quarterly allowance for over-the-counter pharmacy products such as cold and allergy medications, eye drops, vitamins, supplements and compression stockings

— house calls by doctors or other health care providers, under certain conditions

— a home health care aide for a limited number of hours to help with dressing, eating and other daily activities, possibly including household chores and light housekeeping

However, plans offering these and other services will likely have only some of the options and will have different eligibility criteria and other limitations. The same services likely won’t be available in every county the plan serves.

For example, next year an estimated 150,000 Humana Medicare Advantage members in Texas and South Florida — two of the 43 states Humana serves — who cannot be left alone at home will be able to get a free in-home personal care aide for up to 42 hours a year, so that their regular caregiver can get a break. And more than half of the members in Cigna-HealthSpring Advantage plans will have access to free transportation services in all but five of the 16 states and the District of Columbia where the company sells coverage.

To find these supplemental benefits, seniors can use the online plan finder. After they enter their ZIP code and get a list of plans available locally, they can click on a plan name. That will take them to another page that offers more details about coverage, including a tab for health and drug plan benefits. That page might say whether the new services are offered.

But often the website will simply indicate that specific benefits are available — and perhaps not name them — and advise consumers to contact the plan for more information. A Medicare spokesperson confirmed that there is currently not an indicator on the plan finder for plans offering these expanded health-related supplemental benefits.

In addition to extra benefits, other variables should be considered when choosing an Advantage plan, such as which health care providers and pharmacies participate in a plan’s network, which drugs are covered and the costs.

Where available, several insurers say the new services will be free with no increase in monthly premiums.

“We certainly believe that all of the ancillary benefits we provide will help keep our members healthy, which is good for them, and it’s good for us in the long run,” said Steve Warner, head of the Medicare Advantage product team at UnitedHealthcare, which insures about 5 million seniors or 1 in 4 Medicare Advantage members.

Insurers are betting that services will eventually pay for themselves.

Dawn Maroney, consumer president at Alignment Healthcare, which serves eight counties in Southern California, said it’s much cheaper to give an air conditioner to someone with congestive heart failure to keep that patient healthy than to pay for more expensive medical treatment.

But if the new benefits are such a good idea, they should be available to the majority of older adults in traditional Medicare, said David Lipschutz, a senior policy attorney at the Center for Medicare Advocacy