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34. The following discussion draws from Bonnie

Lefkowitz and Judy Rodgers, “Primary Care Service Delivery Programs—A Critical Element to Ensuring Access to Care,” in Pepper Commission, A Call for Action, Supplement to the Final Report (Washington, D.C.: Government Printing Office, 1990).

the poverty level are eligible for subsidies through Medicaid. These individuals would benefit from this recommendation as the coverage shifts away from a welfare program and outreach efforts encourage full participation.

44. See above, discussion of minimum benefit


35. Office of Management and Budget, Budget of the

United States Government: Fiscal Year 1991 (Washington, D.C.).

36. Physician Payment Review Commission, Annual

Report to Congress (Washington, D.C., 1990)

37. Prospective Payment Assessment Commission,

Medicare Prospective Payment and the American Health Care System: Report to the Congress (Washington, D.C.: June 1990), 22-28.

45. Estimates for mammogram are based on cost es

timates prepared for the Congressional Budget Office for the Medicare Catastrophic Coverage Act. Staff estimates for colorectal screening assume limited screening, consistent with guidelines recommended by the U.S. Prevention Services Task Force, Guide to Clinical Preventive Services and use of the fecal occult blood test. Over time, testing may produce increased costs for already covered services, as problems are detected and additional diagnostic testing or treatment is provided. No additional cost estimate is provided for screening for prostate cancer (a digital rectal examination) as the Commission recognizes its inclusion in otherwise covered office visits for the at-risk population.

38. Omnibus Budget Reconciliation Act of 1987.

P.L. 100-203, Sec. 4005(e).

39. Pepper Commission, Rural Health Care: The

Frontier Perspective, Hearing, 101st Cong. 1st
Sess. (Missoula, Mont., June 28, 1989).

46. Rowland, "Fewer Resources."

40. Omnibus Budget Reconciliation Act of 1989,

P.L. 101-239, Sec. 6003(g).

47. General Accounting Office, Medigap Insurance:

Law has increased Protection Against Substandard and Overpriced Policies (Washington, D.C.: GAO/HRD 87-8, October 1986).

48. Ibid.

49. Consumers' Union, Health Insurance Counseling

Programs for Senior Citizens: A Survey (Washington, D.C., May 1990).

41. In addition to calling for recommendations on

health care for all Americans and on long-term care for the elderly and disabled, the statute establishing the Commission calls for recommendations on health care for the elderly and disabled. The following recommendations focus on the elderly because the disabled population is part of the general population under age 65 and is included in the health care recommendations already presented. Disabled Medicare beneficiaries with low incomes would have Medicare premium and cost-sharing subsidized, just as workers and non-workers receive subsidies for the recommended public or private coverage. These beneficiaries would, of course, benefit from the other Medicare and Medigap changes recommended here.

50. Ibid.

51. U.S. Congress, Senate Finance Committee, Cata

strophic Care: Excess Revenues, testimony of Michael Zimmerman, General Accounting Office, 101st Cong., 1st Sess., 1989, S. Hrg. 101-519.

52. Ibid.

42. This discussion is taken from Diane Rowland,

"Fewer Resources, Greater Burdens: Medical Care Coverage for Low-Income Elderly People,” in Pepper Commission, A Call for Action, Supplement to the Final Report (Washington, D.C.: GPO, 1990). (Hereafter cited as Rowland, “Fewer Resources."]

53. As in the case of health insurance for these

under 65, the Commission recognizes concerns of insurers about adverse selection, since there is no requirement that all Medicare beneficiaries purchase Medigap coverage. It may be appropriate to allow a limited waiting period for coverage of pre-existing conditions for people who in the previous period did not have Medigap protection, whether because they just became Medicare-eligible or because they chose not to obtain coverage.

43. Under current law, people with incomes below

Chapter 3

Why Do We Need Long-Term Care Reform?

Chapter 3

Why Do We Need Long-Term Care Reform?

Between 9 million and 11 million Americans of all ages are chronically disabled and must depend on others for help in the basic tasks of daily living that we call long-term care. As many as 4 million people are so severely disabled they cannot survive without substantial help. Millions more know the physical, emotional, and financial burdens of caring for relatives or friends who need such care—a mother with Alzheimer's disease, a child with cerebral palsy, a husband paralyzed from an automobile accident. Eight out of 10 American voters are personally familiar with the struggle to obtain and pay for long-term care—in their own families, through close personal friends, or because someone close to them will probably need such care within the next five years. 1


Yet in contrast to health care—for which most Americans have insurance even if inadequate—there is almost no long-term care insurance for in-home or nursing home care. The individuals who need this care and their families bear most of the burden out of their own resources. Public support comes primarily from the welfare-based Medicaid program, which covers nursing home care only after people have exhausted all their resources. But Medicaid provides very little coverage for care in the home. Medicare, which covers health care for the elderly and some of the disabled, is prohibited by statute from covering the basic or custodial services that constitute the bulk of long-term care services. Private long-term care insurance, only now beginning to emerge, covers very few of today's elderly and is simply unavailable for people who are already disabled.


As many as a million children need long-term care; one out of three disabled people are under 65.

As more and more people come to need long-term care, the woeful inadequacy of coverage becomes increasingly apparent. America, like many other industrialized nations, has witnessed tremendous growth in its population age 65 and over-growth that has been most pronounced among those 85 and over, the group with the greatest potential need for long-term care. In addition to the “graying” of America, improved medical technologies, including better neonatal and trauma care, have helped extend the lives of many young as well as elderly disabled persons.

Private insurance may expand to assist many of these people. But even optimistic projections indicate that private insurance will fail to reach most Americans, including most of the elderly, even decades into the 21st century, and may not significantly alleviate the need for public support.

Without a change in the nation's approach to longterm care coverage, more and more Americans will have to struggle to find and finance care at home, and will face the specter of impoverishment, especially if they need nursing home care.

To provide the blueprint for a new approach, the Commission assessed the growing problem of inadequate financing for long-term care. It explored the nature of long-term care and the kinds of people who need this care. It then examined how people get and pay for long-term care today, focusing in particular on the limits to public programs. Finally, it explored the potential of private insurance to meet future needs and identified likely gaps in service and protection as the population ages.

for independence because of a chronic illness or condition. Long-term care consists of assistance with basic activities and routines of daily living such as bathing, dressing, meal preparation, and housekeeping. It may also include skilled and therapeutic care for the treatment and management of chronic conditions. Services can be provided in a variety of settings—the individual's home, the community, or an institution.


The long-term care population includes people with a wide range of diagnoses and medical conditions. Regardless of diagnosis, need for long-term care can be measured by assessing limitations in an individual's capacity to manage tasks of daily living. These capacities encompass basic human functions that people do habitually and universally (called activities of daily

Long-term care refers to an array of services needed by individuals who have lost some capacity


“If you're a young person with chronic illness (and) need long-term care, there is no program in place," Marilyn Rubin told the Commission. Her 42-year-old husband Bill has multiple sclerosis. His experience characterizes the many obstacles faced by Americans under 65 who need such care.

The Rubins and their two teenagers live in West Hartford, Connecticut. First diagnosed 24 years ago, Mr. Rubin had no symptoms until long afterward. In 1981, MS forced him to leave work. His condition has deteriorated dramatically since then; today he is a paraplegic.

Since MS is a degenerative disease, Mr. Rubin's health will continue to worsen. This led his neurologist to suggest that they look into nursing home care. But the Rubins encountered a lot of resistance from some homes, partly because Mr. Rubin is much younger than most of the residents—but also because his condition will eventually require intensive, round-the-clock care.

As an alternative, several nursing home directors suggested Connecticut's Prescreening Admission Program. Under it, a medical professional (usually a nurse) and a social worker visit patients' homes to assess their needs. They arrange aide services to help the family care for the patient at home. This seemed to be the perfect solution to the Rubins. But there was one major obstacle: to be eligible, you must be 65.

Mrs. Rubin doubts her husband will survive more than another 10 years. “We need help now, so that we can enjoy these last years. You know there is so much divorce out there. . . . Here are four people who really want to stay together, but there is no agency or program to help people like us," she testified.

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Marilyn and Bill Rubin discovered that, for the working-age disabled, help is hard to find.

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