6

Reflections on the Workshop

Important Points Made by the Speakers

•   With better training, people with disabilities could perform many needed services, often for others who have chronic health conditions and functional limitations. (Claypool)

•   A program focused on relatively young individuals with significant disabilities could provide for their long-term services and supports and wrap around their health care coverage. (Claypool)

•   Continued increases in the federal debt will place increased pressure on investments in the future productive capacity of the United States. (Hoagland)

•   If new technologies could increase personal responsibility for health, demands on public resources could be less onerous. (Hoagland)

•   Social insurance can spread the costs of long-term services and supports and ensure that everyone is covered, including younger people with disabilities who cannot obtain private long-term care insurance. (Wiener)

In the final session of the workshop, three speakers reflected on several of the prominent topics that arose over the course of the day’s discussions. Henry Claypool, executive vice president of the American Association of People with Disabilities, returned to the topic of people younger than



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6 Reflections on the Workshop Important Points Made by the Speakers • With better training, people with disabilities could perform many needed services, often for others who have chronic health conditions and functional limitations. (Claypool) • A program focused on relatively young individuals with signifi- cant disabilities could provide for their long-term services and supports and wrap around their health care coverage. (Claypool) • Continued increases in the federal debt will place increased pressure on investments in the future productive capacity of the United States. (Hoagland) • If new technologies could increase personal responsibility for health, demands on public resources could be less onerous. (Hoagland) • Social insurance can spread the costs of long-term services and supports and ensure that everyone is covered, including younger people with disabilities who cannot obtain private long-term care insurance. (Wiener) I n the final session of the workshop, three speakers reflected on several of the prominent topics that arose over the course of the day’s discussions. Henry Claypool, executive vice president of the American Association of People with Disabilities, returned to the topic of people younger than 49

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50 FINANCING LONG-TERM SERVICES AND SUPPORTS 65 with disabilities and the difficult financial prospects most of them face throughout their lives. G. William Hoagland, senior vice president at the Bipartisan Policy Center, reminded workshop participants of some of the fiscal realities facing the nation. Joshua Wiener, distinguished fellow and program director for aging, disability, and long-term care at RTI Interna- tional, rounded out the discussion by asking what society can afford to pay for long-term services and supports and what it wants to pay. PEOPLE WITH DISABILITIES Henry Claypool American Association of People with Disabilities Many people with disabilities are living in dire circumstances, Claypool said. They often do not have access to long-term care insurance, and they do not have many options for meeting their future needs. Claypool said he considers long-term services and supports to be health care–related services because these services and supports have a significant influence on health outcomes. The interactions between people’s disabilities and the society in which the people with those disabilities find themselves constitute the social determinants of health, he said. Better skills and better training are essential for this population, Claypool said. Society has a huge opportunity to invest in a relatively low- wage workforce that can perform needed services, often for others who have chronic health conditions and functional limitations. Individuals who are given training can promote basic health literacy while at the same time benefiting from that information. They can become more integrated into the community while engaging in exercises that will improve their quality of life. Together, the direct-care workforce and the people they serve can become a laboratory for future investment. Several initiatives in the Deficit Reduction Act were designed to move state Medicaid programs toward greater balance—that is, toward providing more home- and community-based services (HCBS) for the beneficiaries of the program. States have embraced this option as a way to make a limited pot of money serve more people. Turning Medicaid into a program of block grants will not address the central issue, Claypool said, because it will put all the responsibility on states to meet the needs of their populations. Misaligned Incentives Modest work incentives for the working-age Medicaid population have been instituted in the past. Many individuals with significant disabilities could earn fairly significant incomes—say, $30,000 per year or more—with

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REFLECTIONS ON THE WORKSHOP 51 a stable work attachment over time. But current incentives are not set up to encourage working, Claypool said. Younger disabled people have grown up after the Americans with Disabilities Act. When Claypool was young and wanted to go out, he had to worry whether he was going to be able to use the restroom wherever he went. People no longer have to worry so much about such difficulties. Younger people have not dealt with the isolation and segregation that previous generations experienced, he said. They have been mainstreamed in school and have grown up with their peers. They have been much more integrated into the community, and communities recognize the barriers they face. People with disabilities have allies who are actively working on reducing barriers and increasing access to their com- munities and society. However, the systems that support these individuals desperately need modernization, Claypool said. The current job readiness program is a legacy of World War I and was designed to serve people who were injured in combat or while working. Many policies do not yet acknowledge the transformative power of technology, which has become a great equalizer for people in the workforce. Medicaid is a poverty program caught in the midst of state-by-state decisions concerning whether to extend health care coverage to low-income populations. The Affordable Care Act bars pre-existing conditions from being a rea- son to deny the purchase of private health insurance. This provides a huge opportunity for people with disabilities, Claypool said. Being able to buy health insurance is a monumental advance. But more is needed. A program focused on relatively young individuals with significant disabilities could provide for their long-term services and supports and wrap around their health care coverage. Such a program could provide the types of services and supports that these individuals need, Claypool concluded. THE FISCAL PROSPECTS G. William Hoagland Bipartisan Policy Center Hoagland reminded the group of the fiscal realities facing the United States. Throughout the 21st century the federal budget has run a deficit. Although the deficit is currently getting smaller, it is projected to start grow- ing again in 2016, as the baby boomers start to retire in greater numbers. As a result, the total public debt will continue to grow in absolute num- bers and will stabilize at around three-quarters of gross domestic product (GDP), which is well above the historical average. The fastest growing component of the federal budget will then be paying the interest on the

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52 FINANCING LONG-TERM SERVICES AND SUPPORTS public debt, which will grow at about 19 percent annually between 2015 and 2020. In 2023, according to the Congressional Budget Office (2013), domes- tic discretionary spending by the federal government will be only 12 per- cent of the federal budget—less than Medicare (15 percent), Medicaid and other health programs (13 percent), Social Security (23 percent), defense (12 percent), and interest on the federal debt (14 percent). Yet domestic discretionary income, which includes all non-defense research and develop- ment, is the seed corn for the future. Without changes in health care and other programs, even more pressure will be placed on federal investments in the future productive capacity of the United States. Hoagland ended on an optimistic note, however. He said that right before he gave his presentation, he checked his blood pressure with his iPhone. New technologies could help people take more personal responsi- bility for their health, he said. The incentives built into many current poli- cies, though well intentioned, have the effect of discouraging responsible long-term planning, which contributes to the demands being placed on federal programs. If new technologies could increase personal responsibility for health, demands on public resources could be less onerous. THE CHOICES THAT SOCIETY MAKES Joshua Wiener RTI International According to Wiener, the principal questions emerging from the work- shop were: What can society afford to pay for long-term care, and what does it want to pay? Today, the United States and most other industrialized nations spend about 1 percent of GDP on public long-term care expendi- tures. In the next 40 years, because of the aging of the population, that percentage is projected to rise to between 2 and 3 percent. Some argue that an additional 1 to 2 percent of GDP is too much to spend and that long-term care programs will need to be cut. This will be problematic, Wiener said, because most observers believe that long-term care is underfunded. Others argue that an additional 1 to 2 percent of GDP is not that much, especially within the context of a health care system that spends 18 percent of GDP. Indeed, overall health spending increased by 3 percentage points between 2000 and 2010. Today, total long-term care expenditures is just 8 percent of total national health expenditures, and if it doubles to 16 percent, it will still be a small portion of total health care spending. Today, many older adults do not have enough money to pay for their retirement, Wiener said, let alone their long-term care. Between 2005 and

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REFLECTIONS ON THE WORKSHOP 53 2011 total median net worth among workers ages 55 and older declined by about one-third. Older people with disabilities have about half as much wealth as people without disabilities, and older people with severe dis- abilities have about a third as much wealth as people without disabilities. Meanwhile, the private long-term care insurance market has largely col- lapsed. If the private sector cannot provide long-term services and supports, the continuation of the status quo or new public initiatives are the only choices, Wiener said. Wiener cautioned against believing that demography is destiny. Projec- tions are largely based on the increasing number of older people, but the future is not just an extension of the past, he said. For example, slightly fewer Americans are in nursing homes than in 1990, even though the popu- lation of those ages 85 and older has almost doubled. The Need for Social Insurance Wiener advocated for social insurance, arguing that it spreads the costs and ensures that everyone is covered, including younger people with dis- abilities who cannot obtain private long-term care insurance. The Medicaid program also will need to be examined, he said, because that is currently how long-term services and supports are publicly sup- ported in the United States. The program could be changed incrementally without inventing a whole new system. Wiener said this could be done by altering Medicaid eligibility criteria or by expanding HCBS by making per- sonal care services mandatory in the states that currently do not cover it. Discussions about long-term care are not conversations about other people, Wiener concluded. They are conversations about us and our future. All Americans are getting older and will eventually face the risk of becom- ing disabled. In Europe, long-term care is higher on the political agenda, and many European countries are addressing the issue. Americans can learn from the successes and failures of other countries.

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