Home and Community-Based Care
A Lifetime of Health and Dignity: The Role of Home and Community-based Services
Speech
February 2004
A Lifetime of Health and Dignity: The Role of Home and Community-based Services
William D. Novelli, AARP CEO
National Governors Association Winter Meeting
Washington, DC
February 22, 2004
It's a pleasure to be here this morning. I especially want to thank Governor Kempthorne for championing long-term care issues during his term as NGA President.
And, I want to thank you, the nation's governors. We appreciate the partnerships we have with you in a number of states…to expand home care, to pilot innovations in financing and delivery and to reform the whole system. We want more partnerships in more states to improve the quality of life for our members and your constituents.
At AARP, we have a ten-year social impact agenda—you have a copy of it. Our goal is for people 50+ to have independence, choice and control in ways that are beneficial and affordable for them and for society.
And, independence, choice and control are exactly what's missing in our long-term care system today.
More than anything, Americans with disabilities want independence in their daily lives, and nearly all want to remain in their own homes and receive care there. But, they and the families who care for them are often frustrated by the absence of a coherent, easily accessible and affordable "system" to help them. And, most of these people are living with multiple chronic diseases.
With dramatic demographic changes ahead of us—on top of the immense needs we have today—we have to build and maintain a consumer friendly system that serves people who require long-term care and their families. Care and management of chronic disease is an important part of this.
Many experts say we should begin with creating a single point of entry for people seeking health care and long-term care services. The idea is to provide the best information from the beginning… and then follow with plain directions once a choice has been made. We plan to do extensive work in this area of navigation.
We need services that assist with the activities of daily living and that are available, affordable, and of high quality everywhere—especially through home- and community-based services and assisted living.
By giving those with disabilities the power to direct spending to meet their own needs, the home and community-based care sector will grow. This idea, where "the money follows the people" is still fairly new, but it has been successfully piloted here in the U.S. and implemented abroad.
We also have a serious quality problem related to financing and staffing. Reimbursement rates vary substantially from state to state, and some states have inadequate financing. Also, staff turnover in nursing homes exceeds 100 percent per year. These two factors combined create difficult problems for delivering quality care.
Many older people with disabilities, and their caregivers, need support services and assistive equipment in their homes and communities.
- Only about half of persons 50 and older with disabilities report receiving any regular help with daily activities.
- Nearly all such help is from family or other informal caregivers.
- Community-based services—although limited—are available. But, only one out of three uses them. People don't know about sources of support or how to find them, or if they are eligible for publicly funded services.
- More than a third of homeowners would like to make simple home modifications to make their lives easier, such as installing grab bars in the bathroom, but cannot do so, largely because of cost.
For most, the needs are relatively modest and could be met if modest assistive equipment and other new technologies were more widely available.
All of this leads to a number of areas where we need change.
- We need to insure individuals against the high costs of long-term support services and find ways to lessen their heavy financial burden.
- As more and more Americans want to "age in place," we need to create more livable communities and accessible housing for people with disabilities and everyone else.
- Medicaid continues to spend most of its long-term care dollars on nursing homes, not home care. We need to "balance" the Medicaid system between nursing homes and home care.
This isn't about nursing homes versus home care. It's about reforming the whole financing and delivery system. We need to educate people to plan for long-term care. And, Federal policy should also promote more consumer choices in types of services and in the settings in which they are offered. - Providers should focus more on functioning and health-related quality of life, and the management of chronic disease, not just acute and curative care. And, we need more emphasis on disease prevention and health promotion. One way we're approaching this is through our physical activity programs.
- We need better tools to select quality service providers, better measures of provider performance and—very importantly—an increased supply of workers providing frontline services.
Finally, family caregivers are the backbone of our system, providing 80 percent of the care without pay and often with little support. They need respite services such as adult day care, tax credits or stipends, and emotional peer-group support. Nearly half of Americans 50+ are involved in caregiving at some level, and 10 percent have substantial physical, financial or emotional burdens as a result.
In all this, we need a system that will offer choices to those who need the most care and those who need the least, and everyone in between.
We have been working with many of you in a number of states to reform state long-term care systems. Just last week in Boston, AARP Massachusetts stood with Governor Romney as he unveiled the "Helping Our Massachusetts Elders" initiative to help seniors maintain long-term independence in their communities. We're proud to support it.
Virginia, Nebraska, Idaho, Ohio, Michigan, Tennessee and North Dakota are examples of other states where we are working together.
We want to expand our partnerships to more and more states. By working together, we can help people achieve independence and enjoy a lifetime of better health and dignity. And, in the process, we will improve health outcomes and reduce health-care costs for our states and the nation.