Long-Term Care Trends
The Challenge of Long-Term Care: A Search for Solutions
Speech
October 2003
Joanne Disch
Member, AARP Board of Directors
International
Forum on Long-Term Care
Hyatt Regency Washington on Capitol Hill
Washington, D.C.
Good morning and welcome to AARP’s first international forum on long-term care. I would first like to acknowledge our distinguished guests, senior health officials from Australia, Germany, The Netherlands, New Zealand and the United Kingdom. We are delighted you could join us.
This collaboration reflects two emerging realities. First, that the phenomenon of an aging nation is not uniquely American. Aging knows no boundaries. And neither does its opportunities or challenges. This is a worldwide phenomenon.
And second, as one of America’s leading voices for social change, we at AARP understand that we must work with our international neighbors and partners because global aging affects us all. We recognize that the aging demographics increasingly affect the world’s interconnected economies and societies.
Let me share some fascinating statistics on the aging population:
- More than half of all human beings who have ever lived to age 65 are alive today!
- In 2002, over 15 percent of the populations of France, Germany, Italy, Japan, the United Kingdom and the United States were 60+. By 2050, more than 26 percent of the population in these countries will be at least 60. Japan and Italy lead the pack with a whopping 42 percent.
- Here in the Unites States, the fastest growing population segment is people 85 years of age and over. And the second fastest growing population is those who have celebrated their 100th birthday.
These are a lot of numbers to digest, but the point is simple - global aging is not going away anytime soon.
Everyone here recognizes this fact. We hope this collaboration will be the first of many to learn how other nations are addressing the needs and long-term care of a significant segment of our societies.
On a personal note, I am honored to be a part of this dialogue. The issue of providing long term-care to our most vulnerable citizens is one that is particularly close to my heart.
In my 35-year nursing career, I have worked with patients and families of all ages. I have seen the wonderful, selfless work being done by family members and staff in facilities that care for the elderly, and I have also seen a side that often brings tears to my eyes - the abuse, the disrespect, the cruelty.
It is often said that children are society’s most vulnerable, but I believe the elderly are even more so. Why? Because for the most part, the challenges of child care are foreseeable, and oftentimes planned for. The challenges involved in taking care of a child are almost inevitable, and society generally does a better job taking care of even unwanted children.
Caring for the elderly however, oftentimes comes about suddenly and unexpectedly. Many enter the role of elder care-taker unprepared and resentful, and find themselves “stuck” in an unacceptable situation. There is nothing more heart-wrenching in my opinion than for one to have lived life and then to be badly treated at a time when one is most in need.
The needs of older people can and should be met as much as possible, in an environment of their choice. We must give older people the tools to stay independent for as long as possible. Countless AARP surveys tell us that the vast majority of older Americans would rather remain in their homes with easy access to community-based services. That’s almost always the first choice. Modifications in the home and technological supports make this a viable option for more people today.
Some may need to receive services in assisted living facilities such as residential care apartment complexes which provide housing for those who may need help living independently, but do not need skilled nursing care. The level of assistance varies among such facilities and may include help with personal care and housekeeping.
Often, these home and community based services are a less expensive option to nursing homes, which are also sometimes a necessary option.
Whatever the setting, people need to receive quality care that should be accessible and affordable to all who need it. This is absolutely essential if older people are to age with dignity.
The challenge of taking care of the elderly in a dignified way is universal. In fact we share many tensions such as knowing how to pay for an appropriate range of long-term care services in the face of competing priorities, and how to sustain availability of services in the face of growing demand.
I know in the U.S. there is a labor shortage because care providers face problems in retaining nurse aides -the high turnover is attributed to factors such as low wages, lack of benefits and inadequate training.
As we will learn more from our distinguished guests, different countries have different solutions to these challenges. The concept of consumer-directed home care programs for example, gives individuals, rather than agencies, control over the provision and delivery of services.
To help understand the implications of such programs abroad, for the U.S. long-term care system, AARP’s Public Policy Institute just completed a study, “Consumer Directed Home Care in The Netherlands, England and Germany,” which came up with two key findings:
- All long-term care services, including home care, are funded primarily through social insurance programs, which are not means-tested in Germany and the Netherlands. In England, home care is primarily funded through means-tested programs designed and operated by local governments.
- Consumers in all three countries have a choice between agency-directed and consumer-directed home care services. In Germany, those electing the consumer-directed options receive cash payments, based on their level of disability, which they can spend as they wish. In the Netherlands and England, consumers must use funds for home and community services.
These programs reflect just a few examples of the possibilities once the consumer’s needs are understood.
AARP has been in the business of representing and addressing the needs and interests of persons over 50 since its inception in 1958. Our Public Policy Institute continues to reach out across the globe, serving as a premiere international source of information and advocacy on issues affecting those 50 and over.
Our goal is to conduct objective, relevant, timely, and credible policy research and analysis in an effort to contribute to, and influence public debate and discussion about issues of importance to midlife and older persons everywhere.
Countless research shows that the elderly and people with functional challenges want more choices and control in their lives.
In its on going Beyond 50 series of annual reports, AARP assesses the state of America's aging population in such vital and significant areas of concern as economic security and health care. “Beyond 50.03: A Report to the Nation on Independent Living and Disability,” takes an in-depth look at the roles of supportive services, such as family and community, social and physical environments in helping individuals 50 and older live with dignity and independence as they age.
Key findings from the report include:
- People 50 and older living with disabilities, particularly those ages 50-64, strongly prefer independent living in their own homes. They also want more direct control over what long-term supportive services they receive and when they receive them.
- A large majority of people with disabilities would prefer to manage any publicly-funded in-home services themselves rather than having an agency do so.
- Many people with severe disabilities have unmet needs for long-term supportive services and assistive equipment in their homes and communities.
Ultimately, improvements to end-of-life care will only come when consumers are educated and empowered to demand palliative and hospice care, and when physicians and hospitals are better trained to deal with the dying.
Our job is to encourage consumer-directed long-term care supportive services in publicly funded programs similar to those that exist in some of your countries.
The number of these programs is steadily growing here in the United States. A 2001 survey conducted by the U.S. General Accounting Office shows that only two states do not offer at least one consumer-directed program. Again, state to state programs vary in number and range of consumer responsibility.
The U.S. does not yet have anything approaching a long-term care policy, but rather a patchwork “system,” with no single point of entry. The flip side to that though is that our system allows for a lot of experimentation and openness at the state level, because different states are dealing with this issue in various ways.
I’d like to highlight a few examples:
Indiana's CHOICE (Community and Home Options to Institutional Care for the Elderly and Disabled) program has been recognized nationally as a model for providing consumer-driven home and community-based care. This wholly state-funded program, allows local case managers to work directly with consumers and families to define a plan of care to meet their needs, and then to broker with local providers for the best price to deliver the services needed.
Also in Indiana, a bill passed through both houses of the General Assembly without a single opposing vote. This piece of legislation would shift the state’s long-term care spending from nursing homes to include a wide array of home and community-based services. Among other things, the new law will allow public Medicaid dollars (the state and federal government sponsored health care program for low income individuals and families) to follow the individual, so that people can receive the care they need where they need it, and any savings generated from use of lower cost home care can be used to fund additional home care services for residents on waiting lists. It will also protect people from becoming impoverished just because their spouse uses home care.
In the state of Wisconsin, consumers, advocates, providers and, state and local officials have collaborated to design a new approach to providing care. Family Care is designed to provide cost-effective, comprehensive long-term care that fosters the consumers’ independence and quality of life, while recognizing the need for interdependence and support. The two major organizational components to Family Care are:
- Aging and disability resource centers, designed to be single entry points where older people and people with disabilities and their families can get information and advice about a wide range of resources available to them in their communities.
- Care management organizations that manage and deliver the Family Care benefits, which combines funding and services from a variety of existing programs into one flexible long-term care benefit, tailored to each individual’s needs, circumstances and preferences.
Wisconsin also offers a Partnership Program which integrates health and long- term support services, and includes home and community-based services, physician services and medical care. This program is especially good because the services are delivered in the participant’s home or a setting of his or her choice.
A key component of this program is team-based care management. In other words, the participant, his or her physician, and a team of nurses and social workers develop a care plan together. The team coordinates all service delivery. Participants also often keep their physicians, who in most cases, are added to the Partnership provider network.
In the interest of time, I have briefly mentioned just a few of the innovative and unique programs available here in the United States.
And I know that there are exciting advances occurring in other countries that will be helpful to us.
During the presentations, we look forward to hearing more about some of the work being done in other countries, as well as your experiences with aging in the workplace and in health care and pension systems.
Your presence here takes us to another level in our efforts to share what we have learned and to learn from you about the best ways to serve and be served by our diverse aging populations.
At AARP we don’t just say we have the power to make it better. We believe it and we strive to do it. I am convinced that working together, we can continue to enhance the quality of life for older people everywhere, by promoting independence, dignity and purpose.
Thank you.