International Comparisons
Who's in Charge? Consumer-Directed Care
Speech
June 2005
June 29, 2005
IAHSA Sixth International Conference - "Solutions for an
Ageing Society: Sharing the Wisdom"
Marie F. Smith
AARP President
No one grows up saying they can’t wait to get into a nursing home. In my country, for the same amount of money per year, you could attend Harvard – plus have enough for a hefty down payment on a home. Nursing homes cost about $60,000 a year. And where I’m now living – Washington, DC – they costs $85,000. There’s no way to pay for that unless you’re very very rich, or very poor and eligible for Medicaid, the only public health insurance program in the United States that pays, in full, for nursing home care.
But it’s not cost alone that’s at the core of the aversion to being in a nursing home – it’s the loss of autonomy, of control. “Let me live. Let me live with some dignity and quality of life.”
I’m here today representing AARP, a 35-million member association of people aged 50 and older. Despite our size, or perhaps because of it, we are in constant touch with our members. We run surveys, focus groups, research studies, solicit input through our publications – I could go on. But this I can tell you: to thrive as an organization, AARP needs to have its finger on the pulse of its members. That’s why I can say with total conviction that control is what our members want as they age.
A woman I know was bedridden for twelve years. At her side she kept her black pocketbook. That’s where she kept her secret stash of pills, and five hundred dollars in cash. Why? So she could be in control of her pain, so she could pay her own way, so she would not be beholden to anyone. Yes, this control was only an illusion. But it was essential to her sense of well-being.
No matter what age you are, you want to be treated in a dignified way, not a patronizing “how-are- we- feeling?” kind of way. This has been AARP’s vision since its inception almost half a century ago: that people be able to age with dignity and purpose. Everything we do, every program, service, benefit, every piece of legislation we fight for, is to help realize that vision.
I know a lot of you think that in the United States, nursing home is the only long-term care alternative. Even a lot of Americans have that stereotype. Here’s a reality check:
- The median age at admission to a nursing home is 83.
- The average length of stay is quite short – under 2 ½ years.
- Nursing homes are only at 80 percent occupancy because of lower disability rates and overall good health – although that could change if the western world-wide obesity epidemic continues, resulting in increased dementia, as a recent study has shown, and diabetes.
“Home sweet home” is where the vast majority of people want to live, especially as they age. It’s the comfort, the familiarity, the memories. So it’s not surprising that consumer-directed health care, where care is delivered in the home, is what people prefer.
When people’s wishes are respected, we should call it “long-term living,” since this contributes to a life-affirming sense of dignity and independence. As does consumer-directed care, where people can choose from among a broad array of options:
- which services to receive in their home;
- who will deliver those services? Family and friends? Professional agency?
- How much control to take: do they want to hire, fire, train, supervise and pay home health care workers? Do they want all that responsibility? Some of it? None of it?
Ideally, public and private dollars follow the person rather than the providers. The person decides how to spend dollars earmarked for his or her long-term care. The most important feature, however, is choice.
Fortunately, the boomers are coming. I say fortunately because they are coming with their love of choice and disdain of the one-size-fits all mentality. They expect custom care: a broad array of options in the workplace, in the marketplace – and in the long-term care arena.
AARP believes that over the next couple of decades, the boomers in developed countries will be the primary drivers of change in long-term supportive services. Because of the boomers’ concerted consumer pressure, the delivery system for these services will become more diverse, more specialized, more innovative.
There will be more alternative living arrangement as we age – we have a lot to learn from Denmark, for example, about elder cohousing. Denmark has over 200 such communities. The whole idea is to age in community, rather than in place. The notion is quickly catching on in the United States, too. There’s a new elder cohousing community in a suburb near Washington, DC, in the state of Maryland, and a more established one in the state of Colorado.
Innovation will also come about because of technology: telemonitoring and telemedicine will vastly increase the array of health services that can be delivered in the home. Wherever you live – but especially in rural areas – this will be a boon to those wishing to prolong independent living.
Winston Churchill said, “Americans finally do the right thing, but only after they have exhausted all other possibilities.” What he should have added is Americans have much to learn from other countries.
And this holds true for developing countries as well, whose longevity rates are increasing even faster than in developed countries. I’m very eager to hear from Ganga, who will share with us what’s going on in India, and how it must prepare itself for the aging of its population.
I do want to note that Germany, the Netherlands and the United Kingdom have taken some successful initiatives, such as:
- providing respite care for caregivers;
- granting pension credits to caregivers to compensate for their lost earnings; and
- paying informal caregivers – family and friends – for their services.
Unfortunately, the United States has no national long-term care policy – despite spending more on health care than any other country, we rank only 29th in longevity.
On the bright side, our “system” allows for a lot of experimentation on the state and local level. Each state has developed its own policies and programs, some better, some worse.
One of the worst examples is the state of Louisiana, where 93 percent of public funds go to nursing homes. Some even say the nursing home industry controls the state! The industry is very powerful in our country and is quite successful in lobbying for laws and regulations that put them in an even more advantageous position. And many nursing homes are not known for quality of service – bedsores and downright abuse are rife.
Because nursing homes have captured such a large share of the market in Louisiana, there’s a dearth of available home and community based services – unless you pay for it yourself.
The United States may be unique in that it requires people to impoverish themselves in order to be eligible for Medicaid, my country’s chief public insurer for long-term care benefits. I’m shocked too. And Medicaid is suffering from harsh budget cuts: states are stiffening eligibility requirements, so many current beneficiaries are being struck from the rolls.
What’s missing in so many states, Louisiana among them, is a single point of entry for long-term care services. That means scurrying around calling federal or state or local agencies just to find some information.
Let me tell you about a colleague of mine: the elderly mother of AARP Louisiana’s state director recently suffered a stroke. She isn’t poor enough to qualify for Medicaid. And she was healthy enough to be sent home. My colleague and her sister alternated nights sleeping over at their mother’s place.
They contracted with a private agency to provide day-time caretakers. It cost a bundle - 100 dollars a day. Out of pocket. Money can’t buy you love, but it can buy you care. You just need a lot of it.
Over one third of the American workforce now provides some form of eldercare. Caregivers, on average, pay about 20,000 dollars out-of-pocket to help with expenses anywhere from two to six years. Clearly they need a supportive work environment.
There is also a corporate financial aspect. A MetLife-sponsored study found that informal caregiving costs U.S. employers between 11 and one half and 30 billion dollars a year because of lowered productivity.
Respite care and pension credits for caregivers, as well as paying family caregivers, would go a long way to help solve some of our concerns in the U.S.
On a happier note, in the state of Oregon, Medicaid funds are split 30-70, meaning, 70 percent goes to pay for home and community services, as opposed to the 7 percent in Louisiana.
Despite different cultures, different political and social histories, countries face universal challenges in providing long-term care:
- Financing: what is the “right” balance between public and private sector funding?
- Providing quality care: this means developing and implementing regulations that ensure high standards.
- Staffing: with more than 100 percent staff turnover rate, how to recruit, retain and maintain? In my country, professional caregivers, home care aides and nursing assistants earn less than parking lot attendants. Or maids. If you could earn the same hourly rate cleaning an empty motel room rather than caring for older patients in difficult circumstances, which would you choose? Many countries use immigration policy as a short-term fix to staffing shortages.
Public, social and economic policies often lag behind demographics. In the Untied States, when the boomers were born, there was a shortage of pediatricians, nursery schools and day-care options. But we caught up.
And I am confident that we will catch up with boomer needs as they age. Older consumers will drive the need for training more geriatricians; creating more innovative models for long-term living, for building or modifying homes to make them more accessible; for inventing smarter homes, smarter assistive devices, smarter medical technology – all for the purpose of prolonging independence as we age.
We at AARP don’t believe the “sky is falling” because of our aging demographics. We believe emphatically that we can afford to grow older – as well as promote intergenerational fairness. And more: We have come to think that providing for the needs of a graying world is not just possible, but will yield untold benefits to society. People living longer (and healthier) lives means there’s a longer time to work, to shop, to volunteer, to be a source of wisdom and experience. In short, a longer time to contribute. All it takes is a shift in perception equal to a shift in policy.
Once we accept that no matter how old, or sick, or infirm a person is, they must be treated with respect and care, then we can move forward. No amount of medical or nursing care, no amount of technological wizardry, will make up for a person feeling shunted aside, useless, a burden.
I’m very interested in having more discussions with you: to find out what’s working, what’s not. And I’m eager to hear from my co-panelists and their unique perspective in the struggle to foster dignity and purpose for people as they age. Exchanging ideas and learning from each other will ultimately result in a more fulfilling life for older people.
Thank you.