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--> 7 Special Needs Populations: Helping Those Most in Need of Assistance* Throughout the workshop presenters indicated that the first group on which informational efforts need to be concentrated is the more vulnerable members of the Medicare population. The Health Care Financing Administration's (HCFA's) current paradigm of frail elderly includes those with low levels of education, African Americans, those who live in rural settings, those with impaired hearing or vision, Hispanics, and dually eligible individuals (those beneficiaries with both Medicare and Medicaid). The committee acknowledges that there are many population subgroups within the overall Medicare population for which special sensitivity is required. During the workshop, presentations on the special needs of chronically ill individuals within managed care plans, beneficiaries for whom English is not a first language or who have low levels of literacy, and beneficiaries with Alzheimer's disease and other cognitive impairments were given. Chronic Illness in Managed Care Chronic illness is highly prevalent among members of the Medicare population. Some would argue that it is the norm and not a special need. The Current Beneficiary Survey indicates that 65 percent of all elderly people have two or more chronic conditions. Thirty-four percent of seniors report limitations in mobility or activities of daily living, and 35 percent report limitations in social activities. Those people who are chronically or socially isolated use health care services at disproportionately higher levels than the rest of the senior population. 65 percent of all elderly people have two or more chronic conditions. Presenters told the committee of criticism that has been leveled at the managed care industry regarding its treatment of chronically ill individuals and its tendency toward favorable risk selection. Current research suggests, however, that managed care organizations (MCOs) generally treat the same proportion of chronically ill patients as indemnity plans (Fama et al., 1995). Some research shows that MCOs do a poorer job than fee-for-service health care of maintaining the health status of older Americans (Ware et al., 1996). * Presentations by Peter Fox, Francesca Gany, and Katie Maslow provided the material for this chapter.
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--> Looking at the general population, testimony at the workshop indicated wide variations across plans in terms of how MCOs treat chronically ill individuals. On the one hand, the committee heard that many plans do not recognize that elderly people have different health care needs. On the other hand, a number of plans have major programs and special interventions that are not typically seen in fee-for-service systems. Those MCOs tend to have in place more sophisticated systems that identify elderly people with higher levels of risk and that do a better job of case managing. Such MCOs also are more disposed to developing systematic ways of interacting with community-based social services to assist individuals in gaining access to the health care system (i.e., rehabilitation programs and diabetes, hypertension, and disease management programs) (Fox et al., 1998). It is important for researchers to develop for the chronically ill population satisfaction measures that are separate from those developed for the general population receiving care for acute illnesses. The committee was told that chronically ill individuals tend to be happier with their primary care provider if they feel comfortable with that person and that they also rate their satisfaction with a health plan higher if they do not use it very much. It is probably not possible for HCFA to provide information on each health plan's programs that address the special needs of the many subpopulations within Medicare. Beneficiaries and their family members are often concerned with rather subjective, very specific information that the federal government cannot easily provide. Here, private affinity groups or an organization similar to the one that publishes Consumer Reports can step in and indicate not only which plans have a disease management program in place but also which ones are the best. Challenges for the Immigrant Population In 1965, the immigration policy in the United States changed, loosening quotas and substantially increasing the number of immigrants. The immigrants who arrive in this country are typically between 20 and 45 years of age, so many of those first immigrants that arrived in the 1960s are now Medicare beneficiaries. What special consideration should be given to this group? 12 percent of Americans over the age of 65 primarily speak a language other than English. The largest subset, 30 percent, speaks Spanish. Immigrants over the age of 65 have come from diverse areas of the world and speak many different languages. According to HCFA, 12 percent of Americans over the age of 65 primarily speak a language other than English. The largest subset, 30 percent, speak Spanish. These beneficiaries were raised in many different cultures and often favor different methods of health care. Over the past 33 years the largest numbers of immigrants have come from China, Mexico, the Dominican Republic, Jamaica, and India, which are very different from the United States in terms of language and culture. In addition to language barriers, immigrants face the same barriers to understanding and choosing from among the various options under Medicare+Choice as native-born beneficiaries, as well as economic and legal barriers to care. Another concern is that over the past 33 years many immigrants have come from countries with governments that are oppressive or not trustworthy. Therefore, additional complications arise when they are forced to deal with a large program administered by the federal government. Furthermore, even though these
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--> beneficiaries may have resided in the United States for many years, significant numbers of immigrants still cling to their home country's favored methods of health care. Reaching the Immigrant Population For the November 1998 mailing to its Medicare beneficiaries, HCFA planned to prepare information in both English and Spanish. For the large numbers of non-English and non-Spanish speakers in the Medicare population (about 3.3 million people), the question is whether they will be able to use the standard information sources being developed for Medicare+Choice. Will they use the toll-free telephone number? If so, will interpreters be available? How will they read the materials sent to them? Will the burden of information dissemination fall largely on the extended families? What other resources exist for them? Participants emphasized to the committee that one of the most important issues that should be kept in mind when developing information resources for the immigrant communities is their lower level of literacy, particularly with written English. Alternative Methods of Reaching the Immigrant Populations It is also important for HCFA and other groups reaching out to the beneficiaries to work with those in the ethnic communities whom the elderly people in those communities trust. Perhaps the most effective resource will be the media used by the various ethnic communities, particularly radio, because radio circumvents the problems of literacy and trust. Churches and seniors centers also are valuable resources that will need to be used more fully. How to Help Cognitively Impaired Individuals Make Informed Decisions According to data from the Medicare Current Beneficiary Survey, 5 percent of Medicare beneficiaries have Alzheimer's disease and 2 percent are mentally retarded (Eppig and Poisal, 1997). However, Katie Maslow of the Alzheimer's Association estimates that those figures are too low and that approximately 10 to 15 percent of the Medicare population have Alzheimer's disease or some form of dementia and that another 4 to 6 percent are mentally retarded. For most cognitively impaired beneficiaries, the extended family will be the decision maker for the beneficiary. Evidence indicates that just as non-cognitively impaired beneficiaries generally do not understand the basic provisions of Medicare, the same is true for the family members of cognitively impaired individuals. Many family members are unable to distinguish between the Medicare and Medicaid programs and fail to understand basic elements of fee-for-service and managed care plans. When dealing with cognitively impaired individuals, it is critical to make sure that the family members are also provided with good information. Even though HCFA had not begun to publicize the Medicare+Choice program at the time of this workshop, health plans were already sending patients information. At this time of major change and confusion, the committee heard, it is important for family members to understand
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--> that the person for whom they care does not have to choose a different health plan. Several workshop participants* indicated that advocacy groups working with the families of beneficiaries who are cognitively impaired are advising them to wait before making a decision. Anxiety among the family members is very high because they bear the responsibility for making a critical decision for a loved one who clearly needs their assistance. Decision Making by Cognitively Impaired Individuals How does a person with cognitive impairment exercise Medicare beneficiaries' rights in the areas of enrollment, treatment, appeals, grievances, and disenrollment? The American Bar Association Commission on Legal Problems of the Elderly, the American Association of Retired Persons, and the Alzheimer's Association are working with HCFA to develop a set of rules governing decision making in managed care for people with cognitive impairments. Current HCFA materials indicate that state laws in the area of decision making have precedence over federal regulations. States specify who is eligible to make a health care decision for a cognitively impaired person. However, only Florida's law includes selection of a health plan in the health care decision definition. The existing laws in 49 states do not cover health plan enrollment. * Joyce Dubow and Katie Maslow.
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