Commentary on The Commonwealth Fund/Modern Healthcare Health Care Opinion Leaders Survey on Views on Long-Term Care by Carol Raphael, President and Chief Executive Officer, Visiting Nurse Service of New York
With the 65-and-over population expected to double between the years 2000 and 2030—from 35 million to 71 million—demand and spending for long-term care are likely to soar in the coming decades. Yet, little attention has been directed to long-term care at the national policy level. If our nation is to secure the health and quality of life of future generations of older Americans, long-term care must become a priority on the national health care agenda, along with the uninsured and overall health spending.
It is of little surprise that the Commonwealth Fund/Modern Health Care Health Care Opinion Leaders (HCOL) Survey found that the three most urgent challenges facing long-term care are: securing adequate financing, improving the quality of care in long-term care facilities, and developing a workforce that is sufficient in size and skill.
Many Americans, however, have knowledge gaps when it comes to long-term care. A 2007 U.S. Census Bureau survey of 959 Americans between the ages of 21 and 75 years found that while most Americans understand their risk of needing long-term care, they underestimate the cost and overestimate Medicare's role in paying for it. Among the misconceptions in the survey sample:
- Seven in ten think the average cost of nursing-home care is $30,000 – less than half the actual national average cost of $70,000.
- 40 percent believe that Medicare covers the cost of nursing home care for Alzheimer's disease patients (it does not).
Public education campaigns on long-term care have done little to help consumers due, in part, to people's reluctance to face their own decline and the lack of accessible long-term care options. Accordingly, only one in three (29%) health care opinion leaders saw public information campaigns as an effective strategy for helping consumers make informed choices about long-term care. The largest proportion of leaders—approximately three-fourths—reported that they felt that the delivery of long-term services—through, for example, a medical home or care coordination services that link patients and families to available care options and follow patients across settings and providers—would most help consumers to make informed choices.
The following is a look at where we stand on delivery of services, as well as quality improvement, financing, workforce, and technology within long-term care.
Delivery Model Experimentation
Long-term care has been a fertile field for experimentation in service delivery models and increasing consumer options at the state level. States have been rebalancing long-term care spending toward home- and community-based services, in response to consumer preference as well as the increasing cost of institutional care. Between 1999 and 2006, there was a decline of over 8 percent in the number of nursing home residents age 65 and older—from 1.44 million to 1.32 million—signaling that more states are innovating to provide long-term care in community-based settings.
Federally sponsored home- and community-based waiver programs administered by the states cover most personal care services not included in the Medicaid personal care benefit (which is optional and currently offered by 33 states). States have considerable leeway in structuring these programs. Among the services allowed in waiver programs are adult day care, respite care, case management, medical transportation, and caregiver preparation. As a result of this flexibility, however, there is great variability among these programs with respect to eligibility for and receipt of services.
On the national level, in response to increasing consumer preference to age in place, the concept of Naturally Occurring Retirement Communities (NORCs)—communities with concentrated populations of older individuals, which may include a residential building, a housing complex, or a geographic area—has taken hold. Another national program is Cash & Counseling, which offers frail elders and adults with disabilities on Medicaid the option to manage a flexible budget and select the mix of goods and services will best meet their personal care needs.
Improving Quality
While there have been important steps to establish measures of quality in long-term care, much of this work has focused on institution-based long-term care in an effort to provide this data to consumers—and to begin to tie payments to quality. The HCOL survey findings support using payment incentives to fuel quality improvements across the spectrum of long-term care. However, there is a need to achieve agreement on quality standards and metrics in home-and community-based long-term care, including what patient outcomes to strive for in a population that is not expected to "be cured" of their disabling conditions. Much work needs to be done to determine what the entire long-term system should be accountable for, how to incorporate a consumer perspective, and what vehicles should be employed to promote quality.
A Need for Viable Financing
The lack of clear and predictable funding for long-term care creates insecurity and, often, hardship. Individuals do not adequately plan for their later years; while they may rely on Social Security for post-retirement income and Medicare for medical care, most do not have a financial plan for long-term care costs. Consequently, they are forced to pay for long-term care out-of-pocket until they have depleted savings and assets and become eligible for Medicaid.
In 2004, approximately one-third (or $15,000 per disabled senior) of total long-term care spending was financed out-of-pocket, not including the value of donated informal care. Leaders in all sectors—academia, research, the health industry, business, government, advocacy and labor—must reach consensus on a viable financing approach that limits individual exposure, better targets public dollars, and creates incentives to continue helping families through programs such as employee elder care leave. Nearly 80 percent of adults who receive care at home rely exclusively on unpaid help from family and friends, while less than 10 percent received all of their care from paid workers.
Unlike the broader health care policy and political community, the opinion leaders surveyed overwhelmingly agree on a public-private financing solution and the need to bring employers into the picture. They favored a premium-based Medicare long-term care benefit option. Yet to be seen is whether such a proposal would gain political support and spreads risk well enough to lower costs.
Preparing the Workforce
Even if we find a viable financing solution, there can be no long-term care system without a sufficiently large and well-prepared workforce, as the survey participants agree. Long-term care is relationship-centered and training to develop the skills required to care for older adults is crucial to providing quality care. But there are anticipated shortages among nurses, social workers, and geriatricians. Additionally, the number of direct care workforce of paraprofessionals—responsible for much of the hands-on long-term care—continues to be insufficient because of low wages and lack of benefits, few opportunities for career advancement, and competition from other sectors. Employers will need to make these jobs rewarding and offer both continuing education and advancement opportunities.
Expanding Technology
Older Americans could also benefit from improved technology in long-term care. Technology could improve coordination and collaboration across providers and settings, engage patients and families, and increase workforce capacity. For example, health information exchanges allow providers to share patient clinical data in order to provide more effective—and more efficient—care. Telemonitors placed in patient's homes can extend the reach of caregivers by allowing for remote monitoring and early detection of symptoms that require intervention, in time to prevent a visit to an emergency department or an avoidable hospitalization. Technology has the potential to integrate a fragmented system, and providers should be encouraged to use technology as one tool to create innovative and affordable long-term care.
The Next Generation
Collectively, health care opinion leaders will need to recognize that the next generation of older Americans may well be different from the previous ones. The next generation is more likely to want to remain autonomous and in their own homes, to have smaller families and fewer available caregivers, to work beyond age 65, and to be more culturally diverse. Nonetheless, they will grow older, and as they do, they will need a model of long-term care that integrates acute, primary and long-term care while also providing the supportive non-medical services required to maintain physical and cognitive function and a high quality of life.
This model of care must incorporate a rational and accessible array of long-term care options, consensus on care standards, and vehicles to promote quality care. Other needs include a predictable financing system, a workforce with sufficient capacity, and ways to educate and engage future consumers of long-term care, long before a crisis occurs and panic—the enemy of informed decision-making—sets in.
The views presented in this commentary are those of the author and should not be attributed to The Commonwealth Fund or its directors, officers, or staff.