Author 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.

Another way to ensure that long-term care financing reform is included in the platforms of the Democratic and Republican parties is to contact the members of the parties’ respective platform committees.

The members of both committees are listed below. If you are connected to these individuals, please consider sharing your version of the AAHSA platform statements with them by Aug. 1. If you’re affiliated with a not-for-profit organization, it’s important to identify yourself as an individual and not a representative of the organization that you serve.

Republican Platform Committee:

• Republican National Committee Chairman Mike Duncan
• Committee Chair U.S. Representative Kevin McCarthy
• Committee Co-Chair U.S. Senator Richard Burr

Democratic Platform Drafting Committee:

• U.S. Representative Tammy Baldwin
• State Representative Dan Blue of North Carolina
• Maryland Lt. Governor Anthony Brown
• Columbus Mayor Michael Coleman
• U.S. Representative Rosa DeLauro
• DNC Secretary Alice Germond
• Michigan Governor Jennifer Granholm
• Donna Harris-Aiken, a National Education Association Policy Advisor
• Platform Policy Advisor Heather Higginbottom
• Platform Policy Advisor Chris Jennings
• Florida Tallahassee Commissioner Allan Katz
• AFL-CIO Policy Director Thea Lee
• UFCW Local 1428 President Connie Leyva
• U.S. Representative Patrick Murphy
• Speaker Emeritus of the California State Assembly Fabian Nunez
• Obama for America Foreign Policy Advisor Susan Rice
• U.S. Representative Linda Sanchez
• Youth Representative Giancarlo Sopo of Florida
• Ron His Horse is Thunder, Chairman of the Standing Rock Sioux Tribe of North Dakota.

Democratic Platform Standing Committee:

Chairs

• Patricia Madrid
• Judith McHale
• Deval Patrick, Governor

Members

• Danny Abraham
• Elizabeth Frawley Bagley
• Tom Buffenbarger
• Rev. Tony Campolo
• John Chiang, State Controller
• Ingrid Duran
• Maria Elena Durazo
• Peter Groff, State Senator
• Kamala Harris, District Attorney
• Marjorie Hill
• Voncille Trotter Hines
• Joseph P. Hoar, General, USMC, Ret.
• Chuck Hoskin, State Representative
• Nancy Keenan
• Denise King
• Mark Macarro
• Edward McElroy
• Chris Owens
• Douglas Palmer, Mayor
• Diego Sanchez
• Ricardo Sanchez, General, USA, Ret.
• Smita Shah
• Lillian Tamayo
• Patricia Todd, State Representative
• Reginald Weaver

“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.”

Over the next two weeks, the Democratic and Republican parties will be forming their platforms. It’s essential that long-term care financing reform is included in their platforms. That’s why we need your help.

AAHSA recently developed platform statements to share with both parties on the Long-Term Care Solution. Please share you own versions of the following platform statements by July 25.

Whatever your political affiliation, please consider submitting information to both parties.

Democratic Party

• Visit My Barack Obama.
• Enter your zip code under “Find a Listening to America Event Near You” (It’s best to check this site as soon as possible. Many of these events are happening within the next few days).
• Select an event to attend and share your own version of the following platform statement:

AAHSA’s Platform:

Any initiative to reform health care must also include long-term care financing reform to address the need of seniors and persons with disabilities for supportive services. The responsibility of care giving will only increase as the baby boom generation ages and the number of people who need services multiply. A fiscally sound, long-term care financing strategy, based on a national insurance model like the CLASS Act, must be developed to provide cash benefits that maximize choice, dignity and independence for seniors and those with disabilities, regardless of income. The plan should support those who need services and those who provide them, without a bias toward institutional care.

Republican Party

• Visit GOP Platform 2008.
• Click “create platform account.”
• Create an account.
• Click on “submit text entry” and enter your own version of the following platform statement:

AAHSA’s Platform:

Any effort at health care reform must also include long-term care financing reform. The responsibility of care giving will only increase as the baby boom generation ages and needs additional services. America needs a fiscally responsible approach for long-term care financing based on the principles developed in the successful state-based Cash & Counseling programs. These principles, including a cash benefit, offer the maximum choice, independence, and personal responsibility for seniors and persons with disabilities, while ensuring fiscal integrity.

For our Long-term Care Solution, that is.

 We want to show policy makers and the public that providers are helping individuals receive the care they need in their homes for $75 a day, which we believe a national insurance trust could offer individuals when they need LTC. The services can be accessed through Medicare, Medicaid (including state waiver programs) or other home and community-based service programs.

We’ve already heard from Chateau Cushnoc in Augusta, Maine who’s helping two residents of their senior housing facility receive personal care services, therapy and other support for just $34 a day.

Do you know someone in a similar situation? Let us know so we can share how you are making it affordable to care.

Philadelphia. It’s home to Benjamin Franklin, the Liberty Bell, and of course, the famous stairs from “Rocky.”  This year, it’s also home to AAHSA’s Annual Meeting & Exposition.

From Oct. 12-15, nearly 7,000 people will gather at the Pennsylvania Convention Center to attend more than 200 education sessions, view exhiibts from 600 vendors and learn from their peers how to improve care and services for America’s aging population.

The meeting’s theme is “One Voice,” and the speakers for the conference’s four general sessions will offer their own take on the theme. First up is award-winning actress Whoopi Goldberg, who will share her insights using her voice both on and off camera. She’ll by followed renowned individuals including former Senator John Glenn, Intel CEO Craig Barrett and poet Nikki Giovanni.

Attendees will also get the chance to hear a performance by the “Queen of Soul,” Aretha Franklin.

For more information, visit the annual meeting Web site.

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

You’re not the only one. Pew Research Center recently came out with a study that found our country’s 76 million baby boomers were more downbeat about their quality of life than both their older and younger counterparts. This isn’t surprising. According to researchers, the boomers have generally been a “gloomy generation” since the group’s oldest members hit their forties.

The primary source of these blues can be calculated in dollars and cents. Close to 55 percent say it is likely that their incomes will not keep up with the cost of living over the next year.  Compare that to 44 percent of younger Americans and 43 percent of older ones. Almost 30 percent also believe they’ll have to cut their spending to stay afloat. The ironic part of this finding is that most Boomers are in the wealthiest part of their lives. In fact, they are less likely to have taken a second job or to have trouble paying for housing and medical care than others. Yet, almost four in ten say their standard of living is worse, or no better, than that of their parents.

So, why is this relevant to aging services? Because these individuals will soon become the residents and clients we serve. Their opinions will undoubtedly transform our organizations  and force us to evolve to meet their needs and preferences.

Our Scenario Plan , “The Long and Winding Road,” is designed to help providers envision how these changes will affect our field. It features four scenarios that examine our possible paths for the future (all named after Beatles tunes, nonetheless) Take a look. Given this kind of research, which one do think is the most likely to happen?

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?

Since my last post, there have been even more AAHSA members getting letters to the editor published about AAHSA’s Long-term Care Solution as a way to alleviate the high costs of providing long-term care. Check these out:

• Today, the Boston Globe published this letter from Elissa Sherman, executive director of MassAging, about an article regarding rising caregiving costs.
• Jim Leich with the Indiana Association of Homes and Services for the Aging had this letter published in the July 6 edition of the South Bend Tribune.

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

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.”

A few weeks ago, I blogged about a USA Today story on rising bankruptcy rates among the elderly. Today, the paper featured an article with much broader implications: the impact of rising prices on the lives of elderly people living on fixed incomes.

Across the country, seniors are cutting back and seeking out programs and services to help them save money on everything from food to home repairs. Take some of the stories heard at one San Diego food bank. Jannie Hicks, 75, is eating more canned vegetables to compensate for the rising costs of fresh produce.  To save money on gas, Hicks only drives to the grocery store, church and the food bank. Phone calls have replaced regular visits to her friends. Carmen Gonzalez, another senior at the food bank, slashed her grocery bill to just $50 a month. She survives by making tamales and enchiladas with cheese instead of meat.

There are statistics behind these stories. In a recent survey, AARP found that 59% of Americans over 65 reported having more trouble paying for food, gas and medicine. Researchers believe that’s why a growing number of older people are headed to places like credit-counseling centers to find help.

What about Social Security? Well, amount individuals receive is indexed with inflation, but some argue that this isn’t enough because they have a disproportionate need for some goods, like medications. According to the Centers for Medicare & Medicaid Services, premiums for Medicare and its newer drug coverage, as well as the money needed for co-pays, deductibles and any other related costs, eat up 26% of a typical Social Security check.

Other factors, like giving adult financial help, lowering home equity and of course, the high costs of long-term care are affecting the economic strain these seniors are feeling.

While there is no quick fix to this problem, what our country can do to help these individuals is support federal programs, like Section 202 affordable housing, that can help these individuals ensure that their basic needs are fulfilled while avoiding premature, and costly, institutional care. That’s a smart investment.

Once again, millions of Medicare beneficiaries are having their physical and occupational therapy rationed with the expiration of the exceptions process on Medicare coverage of outpatient therapy back in effect as of yesterday.

It’s unconscionable to ration therapy for people recovering from strokes, hip replacements and other conditions when outpatient therapy can restore health and independence for these individuals.

This policy is a powerful example of bad public policy driven by regulation and cost cutting instead of human need. Right now, coverage is capped at $1,810 for physical and speech therapy combined and another $1,810 for occupational therapy for each beneficiary. Since CMS will count any therapy a person may have received since the beginning of the year. many people will unknowingly exceed their annual cap.  These people are likely to find this out when they go for their therapy appointments.

Here’s another way to think about it. If a person had a hip replacement in January and then suffers a stroke in August, he or she will not be able to get coverage for the therapy to help that person recover from both illnesses and eventually need less medical intervention.

There’s just five days until Congress must pass the legislation needed to reinstitute the exceptions process. The House has already passed H.R. 6331, which extends the exceptions process for 18 months by an overwhelming majority. Contact your Senators now and urge them to support this legislation so that ensure that our nation’s elders receive the services they need when they need them.

Last year, AAHSA CEO Larry Minnix wrote a letter to members about making a YouTube video helped Cleveland’s Eliza Bryant Village tell their story in a new way.

Since then, many AAHSA members and state associations have embraced YouTube in their own storytelling efforts. Take a few minutes and watch some of these “YouTube stories.”

• Emmaus Senior Services in Washington D.C. produced this video to showcase the services their organization offers seniors across the District.
• A series of videos from Erickson Retirement Communities about their retirement communities’ Nintendo Wii tournament.
• Maryland’s LifeSpan Network produces a weekly public policy podcast that features important policy news that affects the aging and those who care for them.
• In Denver, Seniors Resource Center produced this video to share how their organization helps seniors stay at home longer.

Do you have a YouTube video to share? Let us know and we’ll post it on the blog.

He may not be David Letterman, but Eric Schubert with Ecumen’s Changing Aging Blog can sure put together a top 10 list…and today’s topic is an important one: why our country must change the way we finance long-term care. Take a look:

1.  The Age Wave is Unprecendented:  About 10 million Americans need long-term care today.  (Note: Long-term care is an array of services, from home care to assisted living, not simply nursing home care.)  By 2020, 12 million older Americans will need long-term care.

2.  Americans Want More Choice:  People want more choices than ever in how they live and receive care.  The nursing home isn’t a place they want to choose. Guess what?  Many states rely on institutional nursing homes for long-term care.   To pay for choices that today’s consumer desires, we have to have new ways to pay for care.

3.  The Costs are Unsustainable: According to the independent, non-partisan Government Accounting Office (GAO), Medicare, Medicaid  (which pays nearly half of all long-term care expenditures)and Social Security will nearly double as a share of the economy by 2035.  Today long-term care alone costs federal and state governments $116.8 billion every year.  We’ve been able to sustain these entitlements because of a low-depression era birth rates and a large postwar workforce.  No more.  Absent substantive change, Medicaid, Medicare and Social Security will overwhelm the rest of the Federal budget.

4.  America’s Savings Rate is Deplorable:  Americans are horrible savers.  In fact, 2005 and 2006 marked the first time since the Great Depression that American’s charted a negative savings rate in back-to-back years.  By 2030, many retirees will not have enough income and assets to cover basic expenditures or any expenses related to aging services.

5.  Business Production is Taking a Hit:  According to the Metlife Mature Market Institute and National Alliance for Caregiving, American businesses lose as much as $33.6 billion in annual revenue because of employees’ need to care for their loved ones.  That is approximately $2,110 per full-time employee who is also a caregiver.

6.  Busting State Budgets:  On average, state governments spend 18% of their budgets on Medicaid, which pays for all most half of all long-term care costs.  These costs are only rising and if left unchecked will crowd out all other spending.

7.  Americans are Clueless as to What Care Costs:  In 2006, according to AARP study, only 8 percent of Americans over 45 could estimate the average monthly cost of what care costs within 20 percent of its actual cost.  In an Ecumen study of baby boomers, nearly a third of boomers think that they will use Medicare to pay for their long-term care costs.  Sorry . . . . Medicare won’t pay for costs such as memory care and assisted living.

8.  Long-Term Care Insurance isn’t the Whole Answer.  Only one in five Americans can afford the long-term care insurance policy needed to meet their long-term needs.  And even if everyone purchased the best private coverage he or she could afford, Medicaid costs still would triple by 2045.

9.  A Worker Shortage:  According to the U.S. Department of Health and Human Services, the next four decades will see a need for more than 4 million care professionals in the U.S.  Who will pay their salaries?  We need to change the financing system to attract great professionals to this profession for the long-term. 

10.  Voters Want Change:  The vast majority of Americans say that our health care system is broken and they desire a well-coordinated, integrated, cradle-to-grave system.  To have such a system, long-term care/aging services must be part of the solution.  According to a 2007 national poll by Genworth and the Mellman Group, voters want long-term care/aging services to be part of national health care reform.  Nearly 8 in 10 voters (78%) stated that the presidential candidates should make this part of their health care proposals.

Here is my addition to the list.

11. It is unaffordable to care: Most Americans have been or will be caregivers, providing support for an elderly or disabled relative or friend. These individuals assume enormous emotional and logistical burdens to care.  A recent National Alliance for Caregiving survey found that caregivers spend more than $5,531 per year to pay for loved ones’ food, transportation and medicine. That’s more than most spend on their own health care. Long-term care insurance is a partial solution for one in five Americans who qualify. But what about the rest of us?  We have to spend down life savings to go on welfare through Medicaid or live with unmet needs. These personal problems are compounded by the crazy and inadequate ways long-term care is financed.  Simply put, it’s time to make it affordable to care.

I know there has to be more than 11 items on this list. Let us know your reasons.

In our youth-obsessed culture, it’s not often you hear that a book about aging isn’t focused on preventing it.  That’s why I was excited to read about A Place Called Canterbury on Bill Thomas’ “Changing Aging” blog.

The premise is simple. Dudley Clendinen is a former New York Times reporter who decided to move into Canterbury Tower, a retirement community (and AAHSA member) in Tampa, Fla., where his mother lived, and write about what he saw. What happened next,  isn’t so simple. Clendinen writes that the 400 days spent at Canterbury were an intriguing and inspiring look at how people from all backgrounds handle the realities of growing older. He describes everything from the weekly cocktail hours to interactions with staff and the tough decisions facing Canterbury’s residents and their families as sickness happens and memories start to fade.

Click here to hear Clendinen share his own take on ”Canterbury Tales” on NPR’s Weekend Edition.

Today, an Associated Press story featured a recent report from Fidelity Investment on long-term care (LTC) insurance. Their most shocking finding? That the average 65-year-old couple have to pay up $85,000  in premiums for their long-term care insurance costs. Once more, that 85 grand is in addition to the $225,000 Fidelity estimates individuals will need for medical costs during retirement.

That just leaves one question: What about the millions of people don’t have $85,000 but still need long-term care?

According to a Georgetown University study, just 24 percent of people between 60 and 79 can afford the LTC insurance policy they need. And even if everyone purchased the best private coverage he or she could afford, Medicaid costs will increase fivefold by 2045. That’s simply unsustainable.

But it’s not just about older people. The article also focused on the financial impact long-term care has on individuals who care for their aging loved ones. Fidelity estimates that a 50-year-old earning $50,000 per year who provides four years of long-term care to a family member could lose more than $140,000 in wages, retirement savings and Social Security over their lifetime because of the costs associated with caregiving.

Long story short, having LTC insurance doesn’t mean it’s any more affordable to care in our country. That’s why AAHSA is proposing a plan that would create a national insurance trust whose premiums provide cash benefits to pay for long-term care expenses. When we are well, we would pay premiums like we do for car or health insurance. When we needed help, we could receive cash benefits to hire an aide, pay a family member who misses work to help us or order groceries to be delivered. Based on sound financial principles, this plan would give us more choice and control over our lives.

And that kind of security is priceless.

Hundreds of providers, consumers and government officials participated in CMS’ Open Door Forum about the proposed nursing home rating system yesterday. On the call, particpants discussed a variety of issues that will impact this system.  Many expressed concerned about the validity of using government survey data, which is based on minimal compliance levels, as the primary factor for determining quality.

Perhaps the most important news is that there’s still time to share your thoughts about this system and how  should be structured and managed. Thomas Hamilton, director of the nursing homes survey and certification group at CMS, is asking that individuals send in their comments by July 23 to  help regulators “make many decisions about the research that needs to be conducted fairly quickly.”

Please send your comments to us and to CMS as soon as possible.

Nursing homes made the front page of today’s Wall Street Journal, but the story wasn’t a scathing expose or a blurb on a new regulation. Rather, this article took an honest look at the possibilities, as well as the challenges, that face nursing homes as they strive to put the “home” in nursing home.

The story’s protagonist was a man named Bill Thomas.  Thomas is a 48-year old physician who is known for developing the Green House  care model.  Unlike other nursing homes, elders in Green Houses live among 10 to 12 of their peers in small, homelike accommodations.  The first Green House was built seven year ago in Tupelo, Miss. Today, there are currently 41 houses in 10 states.

Thanks to the Robert Wood Johnson Foundation, that number may soon be going up. The Foundation recently pledged $15 million dollars over five years to NCB Capital Impact, a not-for-profit organization that is offering technical assistance help to any party interested in operating a Green House.

Money aside, building a Green House isn’t without its challenges. Take regulatory issues.  Nursing homes are some of the most highly-regulated institutions around. There are “life safety” rules intended to keep residents safe, “physical plant” standards that deal with building codes along with health-care rules, food preparation guidelines and general quality of life standards.  Some nursing-home executives argue such rules can make it difficult, if not impossible, to establish a Green House’s homelike environment.

Plus, the concept often faces resistance from nursing home administrators and staff who’ve grown accustomed to the traditional model. I saw this resistance first hand during a screening of Almost Home, a documentary about culture change. In it, a head nurse complained that these kinds of models make it “so much harder” to do everyday tasks like distribute medications or serve meals.

So what is AAHSA’s take? We support the organizations that are  implementing Green House model, but we don’t think there’s a “one size” fits all approach to transforming America’s nursing homes. Eliminating designated meal times, having consistent staffing and making minor modifications to a home’s physical structure can all promote better nursing home care. In fact, our web site features whole section devoted to tips and tools that can help our members offer nursing home residents the services they need in a place they can truly call home.

Today, CMS will host an Open Door Forum at 2 p.m., Eastern Daylight Time about on the new five-star rating system they proposed last week. The ratings will be posted on the agency’s Nursing Home Compare Web site by the end of this year. However, during June and July 2008, the agency is soliciting ideas, comments and suggestions from the public, consumer groups, nursing homes and others.

This call is your opportunity to ask questions and offer suggestions about the system and advocate that  resident satisfaction data, nursing hours and staff turnover rates be included in it.  It is also a chance to ask CMS to detail how survey and certification data will be factored into the ratings. Click here for more information about the call.

To participate, please call (800) 837-1935 by 1:45 EDT and enter the conference ID: 50249977. You can also send your comments to us and to CMS. 

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.

CMS didn’t just announce their nursing home rating system initiative on Wednesday. They also released a fire safety rule that come with a hefty price tag. By 2013, CMS will require all nursing homes to have full automatic sprinkler coverage in their facilities. If a home can’t comply, they will be unable to participate in Medicare.

These changes don’t come cheap. According to a McKnight’s Long-Term Care News article, retrofitting the thousands of homes that to install or improve their sprinkler systems will cost approximately $850 million. And CMS wants each facility to foot their own bill.

There’s no question that making sprinkler systems in nursing homes mandatory in nursing homes is the right thing to do. But the government provide grants or loans that can help nursing homes pay for these expensive systems. The Nursing Facility Fire Safety Act of 2007 proposes a framework for providing low-interest loans to nursing homes that needed financial assistance with this expense. When it comes to fire safety in nursing homes, we at AAHSA believe that the best thing policy makers could do is encourage passage of this bill or other legislation to promote fire safety in nursing homes.

If you’re thinking about making a visit to the “Bank of Grandma and Grandpa” for help with college tuition or summer camp costs. Think again.

A new study by AARP and the Consumer Bankruptcy Project found the  rate of personal bankruptcy filings among people over 65 has jumped by 150% since 1991. Among people 75 to 84, that rate reached 433%.

What’s the cause? Experts believe it comes down to the rising health care costs many seniors face. Medication co-pays and emergency procedures add up.

Take Salynn McCollum, a 68 year old who was featured in a recent Tennessean article on seniors’ rising health care costs. McCollum, a former head start teacher makes $2,500 a month from Social Security and a part-time job. She’s run up $6,000 in credit card debt paying for the medications she needs to manage her Parkinson’s Disease.  She also spends an additional $500 a month for Medicare premiums and drug co-pays. It’s no wonder she has “no idea” how she’ll pay these bills.

According to AARP’s Susan Reinahrd, what makes the situation worse is that many seniors have “ so little time to start over and build up savings, and they have few or no job opportunities,” says Susan Reinhard, “The connection between health and economic security is a big issue for older Americans.”

When it comes to controversial conversation topics between people and their aging loved ones, driving tops the list. At least that’s what researchers from the National Safety Council (NSC) and Caring.com found in a recent survey about topic.

According to the survey, baby boomers were more comfortable talking to aging relatives about selling their home or making funeral plans than about putting away the keys. However, seven in ten believe that someone else should have that conversation with them.

Why the hesitation? Caring.com’s Andy Cohen believes that many seniors see taking away the car as a ”symbolic step towards end-of-life, and it also marks the beginning of the adult child stepping into a caretaker role.”

But it’s not just about today’s seniors. Over the next 20 years, the elderly popluation is expected to reach 31 million. U.S. Census Bureau experts believe that means the number of elderly driving fatalities could surge to 100,000 over the same time period.

How can you prevent one of these tragedies? There’s several resources that can help. Ask your aging loved one to complete the AAA’s self-rating form for senior drivers. Or, share these tips from AARP:

AAHSA’s Long-term Care Solution is gaining ground, state by state. The first state on the “LTCS” tour is Minnnesota. On Wednesday, AAHSA partnered with our Minnesota state association, AARP and several of our members, including Ecumen, hosted a forum about the topic. I found a great summary on Ecumen’s Changing Aging blog about it to share. Hopefully, our forum in California next week will be as successful.  

Financing Long Term Care in America: There’s Common Ground in Aging

AAHSA’s hopping on the Facebook bandwagon, and we want you to join us! Click here to join the AAHSA Facebook group. As a group member, you can connect with your colleagues near and far, watch videos, read the latest news in aging services and find out how AAHSA’s changing the face of aging in America. Send us your contact information and we’ll make you a friend of AAHSA’s too. Let the social networking begin…

When the GAO says something, people listen. That’s why it’s no surprise that their latest report on nursing home quality improvement made the The New York Times.  The reports features a variety of suggestions to make sure America’s nursing homes improve. But there’s one important suggestion missing: tracking staffing. After all, they are the best proxy to quality we have. That’s why AAHSA CEO Larry Minnix wrote a letter to Times in response:

To the Editor:

Sure, hiring a new worker or instituting a training program won’t solve this problem, but it could make the life of a vulnerable person a little better. And that’s what it’s all about.

It’s no secret that adopting culture change principles in a nursing home is the right thing to do. But a new report from the Commonwealth Fund finds that it may be better for business too.

Take staff retention.  Researchers found that 59% of nursing homes who implemented seven or more culture change intiatives, like letting residents determine their daily schedule or asking nursing assistants to participate in care planning, had improved their staff retention rate since they implemented these initiatives.

That’s not all. Occupancy rates went up and operating costs fell as nursing homes adopted more programs that empowered direct care staff and focused on residents’ needs and preferences.

That’s not to say these programs aren’t costly. 31% of nursing homes surveyed reported that cost was the biggest barrier to implmenting more culture change programs in their facility. This survey, however, begs the question: does embracing culture change give nursing homes a better “bang for their buck?”

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!

Lutheran Services for the Aging  (LSA) does. In fact, they made the pages of the Salisbury Post because of their efforts to keep the landscape around their new facilities intact.

“It would have been easy and less costly just to level everything to build our parking lot, but we really wanted to be good stewards of the land and preserve the natural surroundings,” Keesha Smith, LSA’s director of special projects, said in the article.

Smith’s words say it all. Our not-for-profit members have an obligation to be effective stewards of all resources, including natural ones.

How can your organization start “going green?” The “Environmental Stewardship” section of the AAHSA Quality First Web site features a variety of tips and tools you can use to get started.

Our CEO’s communications to AAHSA members, known better as “Larry Letters,” are the most popular publication we produce. Why? I think it’s because Larry’s got a knack for telling stories that inspire us to make a difference.

Take a look at his latest letter. It starts with a simple story, but by the end, you’ll be ready to contact your member of Congress with a simple message: make it easier, and more affordable, to care.
May 7, 2008
Recently, I was invited to teach a class at George Mason University’s masters in public administration program. The regular faculty member is Frank Shafroth, my good neighbor and chief of staff of our Congressman Moran (D-Va.).

Frank represents the best of public service. A distinguished career in the Peace Corps, House of Representatives, U.S. Senate, National Governors Association and county government. Frank is a lawyer by training and a teacher-gardener by constitution.

Frank is intrigued by AAHSA’s Long-term Care Solution, so he invited me to teach his class one evening and share the framework with his students. There were 11 students, ages 20-something to 60-something. Mixed backgrounds, employed in a variety of businesses from government intelligence to the funeral industry.

I asked the class how many had experiences in their lives as caregivers. Seven of eleven hands went up. I asked who would mind sharing their situation. One young woman had experience early in life as a kid. An older Caucasian man had been a long-distance caregiver for his mother. An African-American woman said her family tradition is that the caregiving falls to her because her mother says that caregiving is a daughter’s responsibility (her two brothers agree). There were multiple ethnic backgrounds represented in this small class - and there seemed to be ethnic traditions that differ quite a bit when it comes to expectations about caregiving.

One woman’s story caught my attention. She is 32, a newlywed of three months. She and her husband agreed to move her 97-year-old great-grandmother into their two-bedroom townhouse. They love her a lot. She and new hubby became the caregivers because the grandparents can no longer do the job due to health problems of their own. Her mother and aunt now have responsibility for grandparents and great aunt. I asked her about the “burdens” of caregiving. “My great-grandmother isn’t a burden. It’s just what you do as a family,” she said. “Finding the community resources to help us see about her during the day while my husband and I work is the real burden.” She’s also worried about her parents, so she pays for long-term care insurance for them.

Several in the group could identify with the maze of what I call “yellow pages” assistance with confusing options and no guidance to help make good choices. Several could identify with the hospital discharge crisis of not knowing where to turn when an older person has their Medicare coverage terminated. Getting help in another state with programs that differ from state to state is a common theme. No one to help make choices, make decisions and pursue options. Transferring assets, what’s covered by Medicare or Medicaid or long term care insurance - a mish-mash of financial issues.

Recently, a former member of Congress was referred to me by a Congressional staff member. Her mother almost died a few months back from an infection. The mother suffers from a neurological disease, may also be depressed, can’t go home but may not need the nursing home she’s in and she’s bounced around the acute and long-term care system in a large city.

I asked the former Congresswoman if her mother had received a comprehensive geriatric assessment. “No,” she said, “I didn’t know a comprehensive assessment was even an option.” So, we offered to help her set that up. The Congresswoman loves her parents very much. She just doesn’t know what to do.

The class at George Mason and the former Congresswoman are among 34 million families today that need our help beyond the boundaries of our traditional services. And policy leaders offer few answers. One state seems to believe heavy fines for nursing homes should be a priority in long-term care. Others believe almost everybody can be cared for at home, so let’s close down the nursing homes. Still others are slow to support home-and community-based services because people will come out of the woodwork to take advantage of government programs. Many b