Category Archive

“A picture is worth a thousand words” can be a trite saying, but it’s the truth when it comes to Phillip Toledano’s  “Days With My Father” photo essay.

Toledano’s a renowned photographer with photos regularly featured on billboards in the pages of The New York Times. It’s no surprise that he’d pull out his camera when it came to sharing the story of caring for his aging father, who is struggling with dementia and other health problems.

The photos range from an image of Dad embracing his beloved aide, Carla, to the scraps of paper Toledano believes “are a glimpse into his mind, the disquiet he tries to hide from me.”

Every caregiver has a story to tell. Take a look Toledano’s images. They ”say” it all.

“I hadn’t been pregnant in 20 years, but this was planned just as my previous pregnancies had been. “

No, this recent Newsweek story isn’t about raising children. It’s about another life-changing event: caring for aging parents.

In the article, Anne Kennedy Rickover compares her experiences moving her parents more than 1,000 miles away from her childhood home in Philadelphia to Topeka, Kan., to childbirth.  The author writes how the “lamaze classes,” or help from a friend working with the elderly, helped her parents find physicians and other services. She asked friends in similar situations about their experiences. But like many new parents, she says that they didn’t have concrete advice. They were just “stumbling along without any real answers.”

What’s her conclusion? That like raising children, caring for aging parents should be considered a treasured part of the life cycle. And in it, she writes, she was “shown again the foolishness of my conceits, the infinitely greater sweetness and richness of life, the poignant beginning and ending of yet another cycle.”

On Tuesday, the Fairness in Nursing Home Arbitration Act (H.R.6126) was approved with a 5-to-4 vote by the House Judiciary Subcommittee on Commercial Law and Administrative Law. The bill would invalidate pre-dispute arbitration agreements between a long-term care facility and a resident or client.

“Long-term care advocates oppose the legislation, arguing that arbitration agreements allow them to channel limited Medicare and Medicaid resources to providing quality care instead of funding lengthy court trials,” McKnight’s reports.

Later today, the Senate Judiciary Committee is expected to mark up its version of the bill, S. 2838.

Congress today voted to override President Bush’s veto of the Medicare Improvements for Patients and Providers Act of 2008 (H.R. 6331), legislation that would extend the Medicare therapy caps exceptions process for 18 months as well as place a moratorium on a 10.6 percent cut to Medicare’s physician payment rates.

The House approved the override with a vote of 383 to 41, while the Senate results were 70 to 26. The Senate, which previously rejected a cloture motion, reached the veto-proof majority of 60 votes last week after Sen. Edward Kennedy (D-Mass.), who is recovering from a brain tumor, returned for a second attempt at cloture.

Before the second cloture vote, Sens. Harry Reid (D-Nev.) and Mitch McConnell (R-Ky.) agreed that if the motion passed, the bill as a whole would be considered approved. The House approved the bill with a veto-proof majority on June 24.

Explaining his veto, President Bush said in a statement that while he is not opposed to the “primary objective” of preventing reductions in physician payments, he said that the bill’s proposed cuts to Medicare’s privately run insurance plans, known as Medicare Advantage, were essentially “taking choices away from seniors to pay physicians.” The president described the bill as “fiscally irresponsible,” and said “it would imperil the long-term fiscal soundness of Medicare by using short-term budget gimmicks that do not solve the problem.”

However, at AAHSA we believe the bill will ultimately protect the elderly by helping to, as Rep. Rahm Immanuel (D-Ill.) said before today’s vote, “preserve the doctor and senior patient relationship.”

Larry Minnix, AAHSA’s president and CEO, said, “Thanks to Congress’ decision today, millions of Medicare beneficiaries will continue to receive the physical and occupational therapy they need without fear their care will be rationed or capped.”

photo by Craig Collins-Young

On Friday, AAHSA CEO Larry Minnix was among several legislators, researchers and policy experts invited to speak at a Capitol Hill briefing on long-term care reform sponsored by the Brookings Institution.

Minnix participated in a panel on long-term care financing that was moderated by Peter Orszag, the director of the Congressional Budget Office. During his remarks, Minnix discussed AAHSA’s Long-term Care Solution as a viable way to make it affordable to care in our country.  A webcast of the event will be available soon.


photo by Craig Collins-Young

On Wednesday, the Joint Commission released a new Sentinel Event Alert that focuses on intimidating and disruptive behavior, which the commission says is a problem in many nursing homes and hospitals.

According to the commission, the behavior, which includes “verbal outbursts and physical threats, as well as passive activities such as refusing to perform assigned tasks,” contributes to medical errors and “erodes professional behavior,” producing “an unhealthy or even hostile work environment.”

In its alert, the commission suggests that the field of healthcare has “a history of tolerance and indifference to intimidating and disruptive behaviors,” with both individuals and entire systems contributing to the problem.

The behavior often goes unreported because of the “stigma associated with ‘blowing the whistle’ on a colleague, as well as a general reluctance to confront an intimidator,” the alert said.

The commission’s 11-point plan to eliminate workplace intimidation “will take effect on January 1, 2009, as a rule for all accreditation programs,” McKnights reports. “The Commission is asking facilities to develop a system of reporting bad behavior, educate staff on professional attitudes, implement a method of dealing with unruly physicians and staff, and encourage dialogue between employees.”

The U.S. Senate today is expected to once again consider a cloture motion for H.R. 6331, the Medicare Improvement for Patients and Providers Act of 2008. The bill, which failed to reach cloture by one vote on Jun. 26, needs 60 supporters to proceed.

The bill would extend the Medicare therapy caps exceptions process for 18 months as well as place a moratorium on a 10.6 percent cut to Medicare’s physician payment rates which will begin this month.

Senate GOP members say their main area of contention is how the bill would be funded.

Responding to Republican requests to amend to measure, Senate Majority Leader Harry Reid (D-Nev) on Tuesday said that “75 percent of the Republicans in the House voted for it. And it seems a little unusual to me that this bill, they want to change it now.” Reid added that “every day that it’s not passed, seniors are being affected, doctors are being affected, and veterans are being affected.” Reid said, “If we don’t get 60 votes, the Republicans are going to have to live with that.”

We’ll update you as soon as Congress moves forward.

As the saying goes, hindsight is 20/20. And in the case of Jane Gross from The New York Times’ “New Old Age” blog, there are many things Gross would’ve done differently when it came to caring for aging mother.

Her latest post  features a personal analysis of these decisions while providing readers with information about how to avoid similar situations in their own caregiving responsibilities.

Among other topics, Gross advises readers to find a geriatrician for their elderly loved ones and investigating home care options rather than just traditional nursing homes or assisted living residences.

Two of her tips were particularly interesting to the folks at AAHSA. The first: stick to the not-for-profit sector. In her blog, Gross writes:  ”If I had it to do all over again, I would plan for the worst and seek out a not-for-profit nursing home that met my standards.” Obviously, that’s music to our ears.

The other is Gross’ wish that she had understood the limits of her mother’s long-term care insurance policy. Here’s what she had to say:

“The policy cost us about $7,000 a year because of my mother’s advanced age when we purchased it. It would have paid for retrofitting her own home, or even mine. It would have paid for 24/7 home health attendants. But it was virtually useless in an assisted-living apartment, and once my mother was in a nursing home, the policy benefit wasn’t ours to spend.

As long as my mother still had assets and could pay for her $14,000 a month room, the insurance benefit went to the nursing home and reduced her bill accordingly. When she ran out of money, in fairly short order, she was eligible for Medicaid, not because she was old but because she was impoverished. Then the insurance benefit went to the federal government.”

Gross isn’t alone. Across the country, thousands of individuals find that even with LTC insurance, their loved ones end up in unfavorable situations where it is simply unaffordable to care for them. That’s why we are advocating for a national insurance trust that provides cash benefits that individuals who need long-term care can use to pay for the services they need in a place they call home. 

Now that you’ve heard from Jane, we want to know you  caregiving “woulda, coulda, shouldas.” How would you help a new caregiving make the most of their options while avoiding the pitfalls many caregivers face?

A few days ago, The New York Times launched the “New Old Age” blog to promote discussion about the issues facing our aging population and those who care for them.  Jane Gross, a seasoned NYT reporter, is the blog’s primary author. Her experience caring for her aging mother inspired her to cover stories on the topic for the publication.

Already, hundreds of readers have praised the newspaper for starting the blog. Nearly 500 readers commented on the first post alone. Here’s an excerpt from her first blog post. Let us know what you think.

“Jim’s mother-in-law has fallen again. For the fourth time this year.

He and his wife meet the ambulance at the emergency room, then try to keep the frightened, old woman distracted through the long wait. They check her into the hospital with several broken bones and an unsteady heartbeat. They spend days at her side, jolly her through the rigors of rehab and finally take her back to her apartment, as they have so many times before.

Along the way, the 60-something couple, friends of mine in Los Angeles, learn which pain medications make an 87-year-old woman delirious and which leave her in a stupor. They learn that Medicare covers orthopedic surgery but not long-term care at home. They learn about stage-three bedsores. They learn that out-of-town siblings can be summoned for a few days respite but don’t fully grasp the relentlessness of the caregiving task.

Nobody wants the old woman to die, but her misery is a heavy blanket muffling many lives. Each mad dash to the ER, each hospitalization, takes a toll. On top of the cost of assisted living, Jim’s mother-in-law needs private duty home care, or else the next fall could be her last. But what happens if and when even 24/7 help isn’t enough? A nursing home? Who pays, at upwards of $100,000 a year? And how long will the money last?

These are the trials many of us face during the final years of our parents’ lives, as we lurch, ignorant, from crisis to crisis. When my brother and I began this journey with my mother, who went from feisty independence to utter reliance on her children in a matter of months, we were making it up as we went along.

We knew nothing about entitlement programs. What do you mean Medicare doesn’t cover the cost of home care or assisted living or a nursing home? We knew nothing about the advantages and disadvantages of hiring companions and aides through agencies or word-of-mouth. What do you mean that the agency aide needs permission from a supervisor before picking my mother off the floor if she falls?

We knew nothing about hospital discharge planning. What do you mean she has to leave tomorrow when we have no place to take her? We knew nothing about geriatric medicine. What do you mean emergency rooms and intensive care units can cause a form of psychosis in the elderly, or that a catheter can lead to an undiagnosed urinary tract infection and even death?

We knew nothing about Medicaid spend-downs, continuing care retirement communities, in-hospital versus out-of-hospital do-not-resuscitate orders, Hoyer lifts, motorized wheelchairs or assistive devices for people who can neither speak nor type. We knew nothing about “pre-need consultants” who handle advance payment for the funerals of people who aren’t dead yet, or “feeders” whose job it is to spoon pureed food into the mouths of once-dignified men and women.

At the time, between 2000 and 2003, my brother and I felt terribly isolated. As leading edge baby boomers and the children of older parents, we were the first of our friends to go through the drawn-out process of watching a mother or father grow more helpless with each passing day until the role reversal put us squarely in charge of everything. Once in charge, we had to rely on each other as never before — sometimes perfectly in synch, other times at each other’s throats.

At work, the assistance available to new parents did not readily extend to our situation, which was as laborious as child care but without the joy or the promise for the future. When I asked for a four-day week here at The New York Times, exhausted from my dual labors, the person in charge of such matters, who readily agreed, noted that I was the first employee to make such a request but surely wouldn’t be the last.

How right he was. Today, in the newsroom at The Times and at places of business everywhere, middle-aged men and women in growing numbers are juggling their jobs, their parents’ increasing needs, frequent emergencies and all the other moving parts of their lives. They look stunned and very tired. I remember it well. Because I chose to write about aging and caregiving in the wake of my mother’s death, gaining a level of expertise I didn’t have when I needed it, they come to me with questions.

How can they find a reliable home health aide? What should they look for in an assisted living community? How long is the waiting list at top-notch nursing homes? How onerous is the paperwork for applying for Medicaid? Is it worth spending money for the guidance of a geriatric case manager? How do you persuade a parent that it is no longer safe to drive, or that the time has come for live-in help at home? What can be done about siblings who won’t carry their weight? Or about siblings who disagree over end-of-life or financial decisions?

The experience of fielding those questions inspired this blog. I intend for it to be a source of information and community for grown children faced with these new responsibilities, for the elderly adjusting to unwelcome limitations and dependency, to employers interested in easing the burden, for professionals in the field and for anyone else who wants to chime in. Whining is permitted. Wisdom, and humor, are especially welcome.

But most of all, I hope you will tell me, and each other, what problems you face and how you have solved them; what changes in American health care policy, in the workplace and in the community would make your lives easier; what has surprised and inspired you; and how your family has changed, for better or worse, as a result of this intergenerational experience.”

According to updated Centers for Disease Control and Prevention (CDC) data, in 2007 roughly 23 percent, or 12.2 million, of those aged 60 and over in the U.S. had diabetes. The agency also estimated that about 536,000 new cases appeared among that age group. Over all, 23.6 million Americans live with diabetes, and researchers say the new numbers represent a 15 percent increase from a 2005 report that found about 21 million living with the disease.

The CDC points out that diabetes, which is associated with high levels of blood glucose due to irregular insulin production, is “the seventh leading cause of death in the country and can cause serious health complications including heart disease, blindness, kidney failure, and lower-extremity amputations.”

For seniors, diabetes can be particularly detrimental. The CDC reports that in 2004, heart disease contributed to 68 percent of diabetes-related deaths among people

aged 65 years or older. Stroke contributed to about 16 of diabetes-related death for that same age group. The agency also notes that people aged 60 or older with diabetes “are 2 to 3 times more likely to report an inability to walk one-quarter of a mile, climb stairs, do housework, or use a mobility aid compared with persons without diabetes in the same age group.”

The data did have some encouraging news. Over a two year period, the number of people with diabetes that did not know they had the disease decreased from 30 percent to 25 percent, the agency said.

Ann Albright, Ph.D., director of the CDC’s division of diabetes translation, said that while it is “concerning to know that we have more people developing diabetes,” it is good to find that “more people are aware that they have diabetes.” Albright added, “That is an indication that our efforts to increase awareness are working, and more importantly, that more people are better prepared to manage this disease and its complications.”

However, according to the Diabetes Prevention Program, a research study focused on examining the effects of diet and exercise on the prevention or delay of type 2 diabetes, lifestyle intervention reduced the risk of developing diabetes by 71 percent among adults aged 60 years or older.

For more information and tips on prevention, visit the CDC’s Diabetes Web site.

Recently, researchers from the Alzheimer’s Association found that one in eight baby boomers will be diagnosed with Alzheimer’s disease in their lifetime. But that’s the only number that’s causing concern about this disease. The others, however, can be calculated in dollars and cents.

Sunday’s Wall Street Journal featured an article about the financial implications that come with caring for a loved one with Alzheimer’s. Take Theresa Kraus. When her mother got the disease, she figured that her Mom’s resources, along with savings, would easily cover the costs of her health care. Then reality set in. The cost of round-the-clock care and additional household, utility and other healthcare expenses left Theresa thousands of dollars in debt. She even had to max out her daughter’s college savings account to cover those costs.

Earlier this month, a Dallas Morning News  article also highlighted how three families were handling the financial issues that come with an Alzheimer’s diagnosis.  For many, that diagnosis led them to sell their homes, ask family members for financial help or apply for public assistance.

These stories beg a question our country must consider: How can we ensure that individuals with this disease receive the services they need them at a price they can afford?

That’s what our Long-term Care Solution is all about. This plan proposes a national insurance trust whose premiums provide cash benefits to individuals when they need long-term care. When people are well, they would pay premiums like they do for car or health insurance. When they needed help, they would receive cash benefits to hire an aide, pay a family member who misses work to help them or order groceries to be delivered. Based on sound financial principles, this plan would give them more choice and control over their lives while making it affordable to care for them.

For now, there are resources that can help. The Alzheimer’s Association developed an online tip sheet that offers readers tips for managing their financial matters effectively while tackling this disease. The National Institute on Aging also published a legal and financial planning guide for people with Alzheimer’s disease and their family members to use. Feel free to share any other resources you’d recommend with us.

Over the past few months,  you couldn’t help but see stories in the press about the concerns associated with long-term care costs in our country.  Many AAHSA members submitted letters to the editor as a way not only to respond to these stories, but also promote our  Long-term Care Solution as a way to allievate these concerns. Several of these letters were published in papers across the country. Here are this month’s highlights:

• On June 2, The Buffalo News published this letter from Lutheran Social Services’ CEO Tom Holt about the plan.
• Sandee Levin with the Virginia Association of Nonprofit Homes for the Aging had a letter published in the Frederickburg Free-Lance Star.
• On June 10, the Dallas Morning News published a letter from Texas Association of Homes and Services for the Aging’s President George Linial about how our plan could make caring for individuals with Alzheimer’s Disease more affordable.
• Carrie Ermshar from the Tennessee Association of Homes and Services for the Aging had a letter published in the online version of The Tennessean.

Have you seen a similar story in your paper? Let us know and we can help you draft a letter of your own.

On Wednesday, the Centers for Medicare & Medicaid Services (CMS) announced that it plans to launch a “five star” ranking system for nursing homes not unlike the way hotels and restaurants are rated. The new system will be part of the agency’s Nursing Home Compare Web site.

According to CMS Acting Administrator Kerry Weems, “The new ‘five-star’ rating system will provide a composite view of the quality and safety information currently on Nursing Home Compare to help beneficiaries, their families, and caregivers compare nursing homes more easily.”

While many in the nursing-home field support a system to rate the quality of a provider, one area of concern about Mr. Weems’ plan is that it is based on inconsistent data taken from state surveys of homes. State surveyors are often underfunded and undermotivated. A GAO report issued in May reflects this fact, finding “approximately 70 percent of federal comparative surveys identified state surveys missing at least one deficiency at the lowest level of noncompliance, and in all but five states the number of state surveys with such missed deficiencies was greater than 40 percent.”

At AAHSA, we believe a rating system that helps consumers identify both high and low performing nursing homes is essential. Consumers deserve nothing less than a reliable seal of approval for the best nursing homes in America.

To be reliable, it’s important that a rating system be based on four essential pillars: resident and family satisfaction, staffing based on resident needs that measures nursing hours and staff satisfaction, clinical quality outcomes, and public oversight. Each of these pillars needs to be based on up-to-date and valid data.

We’re already working with CMS and other stakeholders on the Advancing Excellence in America’s Nursing Homes campaign to strengthen all four of these pillars, enhance quality in nursing homes and increase the public’s trust. We believe there should be two types of nursing homes: the excellent and the non-existent.

Sen. Charles Grassley (R-Iowa) on Wednesday introduced the Preserving Access to Medicare Act of 2008, legislation intended to postpone a scheduled 10.6 percent reduction to Medicare physician payments. Sen. Grassley said the cuts would likely affect seniors’ access to physicians.

Under Grassley’s bill, a 0.5 percent physician update would be provided for the rest of 2008. That percentage would increase to 1.1 percent for 2009. To help pay for the plan, the bill would cut over the next five years roughly $12.5 billion from privately run Medicare Advantage plans.

The measure also offers incentive payments to healthcare professionals for using a qualified e-prescribing system. Rural home health agencies would see a five percent home health add-on payment for 2009, and starting Jan. 1, certain skilled nursing facilities would be included as originating sites for the telehealth services initiative.

Sen. Grassley said that unlike similar legislation introduced by Sen. Max Baucus (D-Mont.), his bill was far more likely to be signed into law because it “does not make large, unwarranted cuts to Medicare Advantage.” The Baucus bill, the Patients and Providers Act of 2008 (S. 3101), would cut roughly $13 billion from the private Medicare Advantage plans.

On Monday, Kaiser Permanente, the nation’s largest nonprofit health maintenance organization, announced that it will team with Microsoft Corp. to begin a pilot program that will connect Kaiser’s My Health Manager and Microsoft’s HealthVault, two consumer-controlled personal health record (PHR) platforms.

According to the New York Times, if the pilot program is successful, the new product “will be offered to Kaiser’s 8.7 million members in nine states and the District of Columbia.”

Currently, nearly 2 million users of the Kaiser PHR are able to access clinical information and health management tools, including the ability to order prescription refills and to schedule appointments online. However, Kaiser says linking with Microsoft’s system will offer users an even wider array of “health and wellness management applications.”

HealthVault allows patients to store all of their health information, “from prescriptions to X-rays and lab reports,” the San Jose Mercury News explains. Although many of the major insurers, including Kaiser, Aetna and WellPoint, offer their own online databases, Microsoft’s HealthVault enables users to cull all their data in one independent location. The company explains it as being more of a “hub of a network of Web sites, personal health devices, and other services.”

Peter Neupert, corporate vice president of Microsoft’s Health Solutions Group, said, “As the universe of online health applications continues to grow, people will learn how technology can empower them and their trusted providers to make the most informed decisions about their health and care.”

But while the electronic health management tools are meant to make accessing information easier for both health-care professionals and patients, some experts are concerned about privacy issues because, according to the Cleveland Plain Dealer, information aggregation and sharing sites are not covered by the Health Insurance Portability and Accountability Act, or HIPAA, a regulation that govern medical information privacy.

Kaiser and Microsoft have responded to privacy concerns by explaining that their tools and Web sites “adhere to federal standards for data exchange and include advanced safeguards to protect members’ personal information,” Reuters points out.

Attention all caregivers: AAHSA wants to hear from you!

We’re developing a “Tips from the Experts” page of our Web site for consumers looking for guidance on finding and evaluating care and service options for seniors. …and guess who the experts are? Caregivers like you!

Here are the categories we’re considering:

–How to evaluate a CCRC

–How to evaluate an assisted living residence

–How to evaluate a nursing home

–How to evaluate an adult day services provider

–How to evaluate a home health provider

–How to determine what services are best for an older person

–How to find services in your community

We’ll publish your tips on our Web site with your name and photo. Let us know if we’re missing any questions or categories and we’ll add them to our site.

I’m looking forward to reading your responses!

Watch out, Washington.  Everyone’s favorite domestic diva/lifestyle mogul is coming to town. And she isn’t her to share a new recipe or helpful housekeeping hint. She’s here to tell Congress why we must support those who care for our nation’s most vulnerable citizens.

Martha will join noted aging experts, including Dr. Robyn Stone from our Institute for the Future of Aging Services, at a Senate Special Committee on Aging Hearing entitled, “Caring for Seniors: How Can We Support Those on Our Frontlines?”

During the hearing, the committee will review a major Institute of Medicine report that features major recommendations for improving and expanding the skills and preparedness of the long-term care workforce.

Martha’s no stranger to caregiving. She care d for her beloved mother, “Big Martha,” until her death last year. That experience inspired the corporate giant to establish the Martha Stewart Center for Living at Mount Siani Hospital in New York in 2007. The clinic services as a model for coordinating outpatient geriatric care services for seniors across the city.

The hearing will be held at 3 p.m.  on Wednesday in the Dirksen Senate Office Building. Be sure to catch the Webcast if you can.

From from baking perfect pies to transforming our workforce. Is there anything Martha can’t do?!?!

Here’s a great posting from AAHSA’s Quality First Blog about a topic that providers everywhere need to consider: meeting the needs of GLBT seniors today and tomorrow.

A lot, according to two new reports from AAHSA’s Centers for Aging Services Technologies (CAST) and AARP released last week about the perceptions

In their report, AARP researchers found that older people are willing to use devices—like those that regulate lights and temperature, detect when someone has fallen, or monitor blood pressure—if using them will help them stay at home longer.

Then there’s the caregivers. Many of them were enthuastic about using technology to “make sure the person they cared for was safe” or get “peace of mind.” But 80 percent of caregivers believed that their loved ones wouldn’t they’d receive pushback from their elders if they tried to get them to use these kind of technologies. It sounds to me like the best way to conquer this divide doesn’t require technology. It requires open and honest communication between caregivers and the loved one.

Both groups, however, see the same two barriers for bringing technology into the home: cost and control.

When it comes to cost, 75 percent of caregivers and 80 of those 65-plus willing to pay $50.00 or less per month for technologies. Both groups also question technology usability, maintenace and ultimate control they will have offer the information that is collected.

So, what’s the bottom line? In a nutshell, it’s that seniors and caregivers must communicate among themselves and with their providers and policy makers to bring the technologies they want into the places they call home.

Mark your calendars. PBS will air “Caring for Your Parents” on April 2nd. The documentary talks with five families about caring for their parents. It should be an interesting piece shedding light on how difficult caregiving can be. Click here to view a trailer on the Web site.

Here is more on the program:

As the population ages, many adult children are grappling with an unprecedented social, cultural, economic, and personal revolution as they transition into the primary caregiver role for their aging parents. Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality.

The first 90-minutes of Caring for Your Parents underscores today’s struggle to keep parents at home, tensions between siblings, and the complexity of shifting caregiver roles through an intimate look at five American families. In the end, the documentary contends successful caregiving requires one primary ingredient—love.

Immediately after the 90-minute broadcast, former NBC medical correspondent Dr. Art Ulene leads “A Conversation About Caring.” This half-hour panel discussion offers concrete advice and guidance on how to start the conversation—often the most difficult step in caregiving.

The stereotypical story starts “once upon a time.” But there’s no such standard when it comes to telling a caregiving story. They begin in many ways, like “When Mom stopped remembering to take her medication,” or “My neighbor asked me to pick up his groceries.”

While each story starts differently, the common thread that ties them together is the compassion caregivers selflessly offer to their loved ones.

That compassion is captured in PBS’ new Watch Over Me series. In early 2008, in PBS’ Boston affiliate encouraged media-makers of all kinds to share their caregiving stories. with the network What they received included everything from the caregiving story of namesake of America’s first African-American township to a film about a son’s frustration with his father’s situation written and shot in 6 hours. Watch and see how these films depict the demands and more important, the dedication, of America’s caregivers.

From bakers to bankers, it seems like Americans working in all types of professions are concerned about caring for their aging loved ones. And the people running for president are no exception.

This article in December’s AARP Bulletin offers an inside look into these individuals’ caregiving experiences, and how it has influenced their work for their elderly constiuents and those who care for them.

Take Arkansas’ Governor Mike Huckabee. His mother, who sold her home so she could afford assisted living, was mere months away from exhausting her resources while living in a nursing home. That experience, Huckabee says, inspired him to support  Project IndependentChoices, an innovative program where “you can live in a facility or with a relative, and the state would reimburse [the family member] for the cost of care.”

Then there’s Senator Hillary Clinton (D-N.Y.) Clinton’s mother, Dorothy, wanted to stay in her own home for as long as possible, but she was having difficulty getting around. ““She (told us) couldn’t always be asking people to take her places. ” Clinton says,  I think that was what really convinced her that she should come and live with us.”

That experience was part of Clinton’s inspiration for developing a long-term care platform that includes, among other policies, tax-credits for caregivers whose family members live with them.

But it’s not just about parents. Sen. Christopher Dodd’s (D-Conn.) brother moved in with his family after suffering a stroke. Together, Dodd tells the Bulletin, “we decided that it was the best option.” That experience must have inspired for his plan, which promises a ““A Secure, Dignified Retirement for Every Senior.”

Democrat, Republican or somewhere in-between, caregiving will affect us all where we live, including the White House.

That’s the first thought I had when I read about Hillary Clinton’s proposed plan for long-term care.

Politics aside, Clinton is the first presidential candidate to address this important issue outside of an interview or a nursing home visit. And I respect her for doing it. Her plan tackles issues that all of us face, like caring for an aging loved one or preparing for our own care needs, regardless of partisanship. My only hope is that more candidates will follow her lead and develop plans of their own. After all, aren’t politicians known for their making plans? (keeping promises, well that’s for another post…)

Some people call it the age wave. Others say it’s a silver tsunami. Whatever you like to call it, the fact of the matter is that our society is aging, and it’s going to affect all of us. Especially the businesses with aging employees and caregivers in their midst. That just leaves one question: are these companies going to ride the age wave, or fall beneath it?

That’s the question Kathryn Roberts asked in a recent editorial in the Minneapolis Star-Tribune. Kathryn is the CEO of Ecumen, a large aging-service provider in the Midwest. But she’s also the daughter of an 86-year-old mother. She knows that businesses are losing valuable time and money (to the tune of $33 billion each year) when they don’t help people like her access the help they need for themselves or their loved ones. To her, doing nothing it’s just bad business. And I feel the same way.

Congratulations to Morningside Ministries of San Antonio, for some wonderful media coverage in the San Antonio Express-News about their advances in design for the aging.  Though senior-friendly design and home-like environments are old news to most people working in aging services, we have a ways to go before the media and the public understand  that living in a senior housing community doesn’t mean living in a hospital. Every story like this one helps break down old stereotypes  of what growing old means for where you live and how you think. We like to see all the coverage like this that’s out there.

What are you doing to tell your story through the media?

In my letters to you, I usually tell the stories of how AAHSA members are working hard to create the future of aging services. Today is different. This letter is about how AAHSA member organizations are showing, and telling, their story in a new way.

Eliza Bryant Village began in 1896 as the first nursing home for Cleveland’s African-American seniors. Today, the organizations continueto live that mission under the leadership of their CEO Harvey Shankman. He and his dedicated staff work hard to ensure that residents like Mary Lou Williams can enjoy her daily walk and the “good food” in the dining room. But there I go storytelling again. Watch and hear from Mary Lou herself.

Take seven minutes out of your day and YouTube with Harvey (http://www.youtube.com/watch?v=OJ5CQiUOzns).

In our increasingly complex media world, YouTube is a fantastic way for non-profit providers of aging services to tell how you live your story. Let me know if you already have a “YouTube story” of your own to share.

Larry

AAHSA’s vision for long-term care is a “healthy, affordable and ethical” system of aging services. Today, those three criteria are far from reality. Few would argue that health care in general, and aging services in particular, reflects well-defined, healthy outcomes. Nor do I know any expert who says what we have today is affordable. Many countries spend far less and have better outcomes. Public outcries related to health care scandals have questioned health care’s ethical underpinnings. And now, Congress and the IRS have their sights focused on not-for-profit ethical behavior and accountability.

Recently, I met with a leading consumer advocate about the state of nursing home care in general and the future of aging services in particular. I asked her what AAHSA’s and the nonprofit role should be in getting beyond where we are today. She said she believes our responsibility is two-fold: continue to create a vision of what the continuum can be for older people in our society and create trust in our work. A provocative perspective succinctly stated.

I submit for your consideration that the vision so badly needed in our field and the trust so hard to earn begins and ends with ethics.

Oh, I’m sure most of us could say with confidence that we are corporately ethical. Our intentions have been noble and honorable for generations. But without a disciplined process of ethical reflection as organized as our processes for financial analysis, it is easy to drift ethically. Ethical lapses lead to crises of trust reflected in headlines that are etched in the public’s mind for decades.

What do ethical lapses look like and how do moral imperatives manifest themselves in difficult times? Let’s use a couple of human resources (HR) examples from real situations. I use human resources because AAHSA’s Ethics Commission, under the leadership of Audrey Weiner from the Jewish Home and Hospital Life Care System in New York, will soon publish a Quality First white paper entitled Our Moral Imperative: Creating an Ethical Workplace. It has guidelines for human resources ethics. It should become part of your corporate ethics tool kit and library, along with corporate compliance, codes of ethical conduct and social accountability material - examples of which AAHSA has available for our members.

In fact, AAHSA’s annual meeting in Orlando this fall is themed “Living Your Story” with daily themes of “A Life of Conscience,” “A Life of Community,” “A Life of Integrity” and “A Life of Legacy” - driven by the AAHSA Ethics Commission’s work.

Back to the human resources lapses and imperatives. Years ago, I visited a colleague’s facility to share solutions to common problems. My organization faced a much higher food service cost per meal than others I compared with. The colleague’s facility had a particularly low-cost program, with labor costs less than half of my facility’s costs. I asked the food service director his secret. He smiled and replied, “It’s simple. Our community has lots of immigrants who need work, so I don’t have to pay more than minimum and I don’t have to offer vacation and other benefits. And if they don’t like it, I can replace them immediately.” Stunning! I wonder: was that an HR policy sanctioned by the board? Did the board even know? Was this an ethical lapse under the board’s radar or corporate intent?

Contrast that with the ethical imperative loudly stated in the actions of Boston member Mary Immaculate Health Care, whose CEO is Barbara Grant. Mary Immaculate experienced a river flood that could have been an even worse disaster. Fire and rescue, local hospitals and nursing homes all responded nobly and quickly, resulting in no injury, no loss of life as the facility succumbed to the river. Perhaps most inspiring was the employee response. Employees on site stayed, others came in to help. All followed their residents to various facilities that took them in. Immediately post evacuation, with a now uncertain future for the facility, the board of Mary Immaculate reassured the staff that no employee would miss a paycheck! A moral imperative, from their perspective.

Our ethical imperative is the leadership dynamic of transformation needed in long-term care. Recently retired CEO Dick Lamden from Wexner Heritage Village in Ohio testified at a state legislative hearing in which conflict about a public policy objective was apparent. Dick’s recommendation to this committee contrasted significantly with the profit sector’s recommendation. After discussion, a prominent elected official stated that he trusted Dick’s recommendation because of Wexner’s history of quality and doing the right things for the right reasons. Unanimous approval.

The Kendal organization in Pennsylvania calls it “One Common Interest” on the cover of its 2006 annual report, which quotes John Woodman, who, in 1763, said:

“Here we face the prospect of one common interest from which our own is inseparable, that to turn all the treasures we possess into the channel of universal love becomes the business of our lives…”

Yes, we have an ethical imperative. It begins with corporate leadership, including the board. It should pervade all aspects of our work. It should encompass all groups of people with whom we have relationships. It is the key to transformational leadership to change a broken system of inadequate quality, despite the resources thrown at it and the competition for them. Ethical thinking is the foundation for change. And it needs to happen every day, in every community.

Larry

William L. Minnix, Jr., D.Min.
AAHSA President and CEO

P.S. Be sure to watch for the September/October issue of AAHSA’s FutureAge magazine, where you’ll find articles that profile members who take ethics and quality to heart, examine the characteristics of a just society, look at what determines an ethical corporate culture and more.

We had better know how to connect with consumers. Our scenario planning document, “The Long and Winding Road,” shows that consumer behavior is one of the two biggest uncertainties for the next decade. (The other is talent availability, which will be addressed in another letter.) What will consumers need? Want? Expect? Will the people be available to provide the services the market needs?

I’d like to comment on consumer connections in two dimensions: the science and the art of understanding and responding to basic human needs in our work. I’ll spend more time on the art because there is an abundance of resources on the science.

Of course, market studies are now an essential part of strategic planning and day-to-day management of current and future service. Regular, daily consumer feedback and response are rapidly becoming the norm, and the ability to analyze that information to generate effective and satisfying consumer service may be the most important management work we can do. There are numerous tools and business friends that can help with the most important driver of our work: understanding perceptions of the people we serve and those who serve them. The science of marketing is complex, but we must master it.

While the razzle-dazzle of marketing science is increasingly critical in our increasingly sophisticated work, I hope we can remember the fundamentals of the art because the fundamentals continue throughout our ongoing service relationship with the people who call on us to help them. This hit home to me recently through a colleague with a mother in crisis. Demented, frail, combative, falling apart, this elder went through a saga that began in an assisted living facility and continued through hospitals, nursing homes, a mental health unit, a rehab facility and a home health agency. My friend and her sister went with her. You know from your own experience that this typical family predicament is difficult in the best of conditions.

As my friend reflected on the situation, she said, “Maybe I’m expecting too much…” I picked up on that statement, perhaps thinking she and her sister were unrealistic—wanting cure where there could be none, wanting an idealistic relationship with their mother that will never exist again, wanting restoration to health where irreversible damage has taken its toll. So I asked her, “What did you expect?” She had no trouble in responding — these are mostly her words—so listen carefully—it is the market speaking through this daughter, who is YOUR colleague—and they apply regardless of the types of service you offer.

1. I expected my mother to be offered a good quality of life for the condition she was in. I expected that she not be avoided because she is unpleasant.
2. I expected her to be clean, well-fed, have interaction and receive the attention the facilities said she would be given and that we paid for.
3. I expected her to be treated with dignity even if she is beyond understanding her condition.
4. I expected staff to let me and my sister take the time to tell them what a wonderful person my mother used to be because all they see now is a crotchety, difficult demented woman.
5. I expected them to believe us when my sister and I said something was wrong.
6. I expected the long-term care facility to know my mother’s medical problems well enough to know that there was a developing crisis.
7. I expected the hospitals where she was transferred to diagnose and fix what they could—not discharge her with an infection she didn’t enter with.
8. I expected my mother to be released from the hospital when her medical problems were resolved, not when she ran out of coverage.
9. I expected professional guidance from professional staff, with a doctor who takes leadership responsibility for coordinating medical care and nurse leaders who would advise me and my sister on what we should do.
10. I expected nursing staff to recognize that cleaning my mother or giving her a treatment and putting her back into a soiled bed isn’t good. Simply saying another department didn’t do its job is not acceptable.
11. I expected on-site advocates—not 1-800 numbers.
12. I expected someone to empathize with me when I sobbed about my mother’s obvious state of affairs—not ask me what’s wrong.
13. I expected to be able to trust the people and institutions to provide good professional care and support my sister and me through all of this.

Too much to expect? Maybe all of our marketing, hospitality, sales and consumer relations programs should begin and end with asking people like my colleague and her sister what they expect throughout the service delivery process… Is that too much?

The great organizations stay closely connected to expectations and needs of the people we serve—connected most closely and intimately in the midst of crisis, not just through the perspective and distance of sophisticated science, though both are essential. No, that’s not too much to expect of us, is it?

Larry

William L. Minnix, Jr., D.Min.
AAHSA
President and CEO

In 1973, my mentor and boss, the late Scott Houston, sent me to visit the late Dr. Herb Shore of University of North Texas long-term care leadership fame. Truth be known, Dr. Shore probably has more disciples in long-term care administration than anyone.

My objective in the visit with Dr. Shore was a report on “philosophies of administration” as part of my own administrative internship experience. As we began a tour of Golden Acres, where Dr. Shore served as CEO, I asked him to define his fundamental philosophy. “Very simple,” he said. “If I take care of the staff, they’ll take care of the residents.”

An enduring truth! Now, 34 years later, AAHSA’s Institute for the Future of Aging Services just completed a multi-year grant called Better Jobs Better Care (BJBC) funded by the Robert Wood Johnson Foundation and The Atlantic Philanthropies. Our March/April issue of futureAge summarizes the experience of the multiple BJBC sites and projects throughout the country. I urge each of you read that issue cover-to-cover and make a human resources plan based on it.

I was also struck by a speech I read from an event at Phoebe Ministries in Allentown, Pa. Though the President and CEO, Rev. Rodney Wells, is an eloquent clergyman, the speech actually came from Louise Santee, a certified nursing assistant (CNA) at Phoebe. Ms. Santee delivered the speech at a celebration of Phoebe’s success with Better Jobs Better Care.

In that speech, she said: “A CNA must have love in her heart for the residents, because it is more than just a job. When you leave work, you think about it all the way home, and then some. If, after you have done your care, the resident is smiling or has a twinkle in the eye, that is all the thanks you need. ” She says BJBC helped her “make things better” by “working together as a team,” which she says is “the Phoebe way.”

So, here’s what we can learn from Dr. Shore, Better Jobs Better Care and Louise Santee:

1. Nurture the love in your heart.
2. Conduct employee satisfaction surveys, act on the findings and measure employee recruitment and retention.
3. Discuss what respect means to everyone in the workplace.
4. Offer competitive wages, family-friendly benefits and career ladders and lattices.
5. Teach and mentor people on leadership.
6. Create a multi-cultural sharing program.
7. Create an ongoing team-building program and teach continuous quality improvement-TOGETHER-at all levels!
8. Invite policy leaders into your setting and let them hear from employees about the importance of the role of the care and service professions.
9. Have fun, celebrate events and share sorrows.
10. Oh, yeah… remember to nurture the love in your heart — because it’s not just a job.

All these have stood the test of time. If we take care of employees, they’ll take care of the people we serve. Or, better jobs generate better care. It’s the right thing to do. And remember what Louise Santee says about the unique rewards of a great day’s work. Bigger hearts, better jobs, better care!

LarryWilliam L. Minnix, Jr., D.Min.
AAHSA President and CEO

Learn more about Better Jobs Better Care.

John Picken, board chair of AAHSA member Kendal at Oberlin, and Benjamin Franklin think alike about not-for-profits.

Franklin established the Leather Apron Society in 1727 based on the premise that “The good that men do separately is small compared with what they do collectively.”

Thus, the birth of the American not-for-profit organization. Our own publication, The Not-for-Profit Responsibility — Changing Lives, Enlarging the Hearts of Communities, quotes Franklin’s belief that benevolence is the binding virtue of society. A century later, Alexis de Tocqueville commented that community action for the public good was honorable and uniquely American.

Fast forward a century. Peter Drucker discerned three fundamental sectors of American society that make it vibrant: business, government and not-for-profits. Each sector has a unique responsibility. Government’s is to protect and oversee. Business’ role is to generate an economy. Not-for-profits’ responsibility is to change lives. More recently, Dr. Lester Salamon, director of the Johns Hopkins Center for Civil Society Studies, defines four major duties of the not-for-profit sector:

• Guardians of values
• Service providers to meet emerging and often difficult societal needs
• Advocates for those often without public voice
• Creators of community (or social capital)

Salamon, in his must-read book for not-for-profit boards, The Resilient Sector, offers facts and figures on the size, scope and impact of this sector on the American economy and our way of life.

Even more recently, Dr. Claire Gaudiani of Yale University, in another must-read book for boards, The Greater Good, discusses how American generosity is the economic engine that drives capitalism as an essential dynamic of democracy. Dr. Gaudiani, who will be a keynote speaker at our 2007 Annual Meeting & Exposition in Orlando, says, “The ultimate form of generosity is the investment in people, property, and ideas.” She reflects on Maimonides, who wrote centuries earlier about the eight states of Tsedakah (which means “generosity that acknowledges the dignity of the receiver”):

“The highest level of Tsedakah is to enter into a partnership with the person in need so that he will become productive and eventually independent.”

Gaudiani has a chapter in her book on the fragile balance between democracy, capitalism and generosity, in which she writes, “Most people think Americans are generous because we are rich. The truth is we are rich because we are generous.”

I submit to you that the “fragile balance” that makes America great rests on the broad shoulders of not-for-profit governing bodies: yes, the volunteers who are generous with time, commitment, money and influence; people who see need and are not afraid to take risks and work hard to meet it.

Most AAHSA members have boards that are bedrock keepers of this fragile balance. Our largest 100 members have average life spans of three generations, compared to our counterparts in the investor-owned sector, which have only a third of that. I’m not making a value judgment with that comparison, but I mention the difference because the not-for-profit sector is expected to fulfill a unique and enduring role: to change lives, enlarge the hearts of communities, guard values, advocate and meet changing needs when it isn’t profitable to do so.

Therefore, governing bodies need to know their jobs. In these complex times, many of our boards are asking that very question: “What is our responsibility?” Public pressure from Congress and the media, spurred by high-profile scandal, raises another question, “How do not-for-profits stand accountable for the recognition American society affords us through tradition and law?”

Salamon concludes that the not-for-profit sector is in danger of “losing its soul” because we act too much like businesses. Jim Collins of Good to Great fame also wrote a monograph, Good to Great and the Social Sectors: Why Business Thinking is Not the Answer (another must-read for our boards), in which he details special characteristics of mission-driven versus profit-driven enterprises.

Which brings me back to John Picken, who put the issue to me like this (I’m paraphrasing): Can our members and their boards “cite the good they do?” Do they “know the difference between doing good and doing well?”

Our boards must answer Picken’s question! But how? There are numerous experts and tools to guide a thoughtful reflection process. Quality First offers an excellent framework for essential board talk. We have a social accountability guide we developed with the Catholic Health Association. We even published a resource that your organization can use to establish a social accountability program in 60 minutes. Experts like Richard Chait, William Ryan and Barbara Taylor are also helping members through their book Governance as Leadership and presentations at national and state meetings. Accreditation through CARF-CCAC is an excellent process that stimulates reflection about effective governance.

This year, AAHSA will hold town hall meetings all over the country about our not-for-profit responsibility and how we must stand accountable for our actions. You’ll find the questions we’ll be asking on our Web site. You can use them to hold a town hall meeting in your organization. I invite you to share your results with me.

The health of American society depends on such dialogue to maintain that essential yet fragile balance of democracy, capitalism and generosity. A key outcome of that dialogue is John Picken’s challenge to know the difference between doing good and doing well. Not-for-profits must do both, or we will not fulfill our unique responsibility.

LarryWilliam L. Minnix, Jr., D.Min.
AAHSA President and CEO