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Special Perspectives on Home and Community Care Susan A. Walker T find home care In an odd position today. On the one hands it is touted ~ as the alternative to institutionalization. On the other hand, because of the efforts to reduce health care costs, patients' home care benefits are being drastically decreased so that, although more patients are being discharged to home care, they have less and less support to remain at home. Home care agencies, whose mission is to help patients remain at home, are struggling to balance patients' perceived needs against their aBowed benefits, rising costs against cost caps imposed by third-party payers, and the need for visits of both He patient and He home heady agency against the financial intermediaries denial for service deemed unreasonable and unnecessary. Consequently, an around the country, those of us in home care are seeing home care agencies fight for survival, and many are losing. Yet, while home care agencies are struggling, patients are Driving under home care. Their successes reaffirm the resilience of mankind and attest to the courage of human beings. Home care also reaffirms He value of the family and attests to the incredible strength of the family in providing home care. With minimal support, families are providing care that used to be provided only in the intensive care units of hospitals. Patients are being cared for at home win intravenous equipment and other infusion therapies, kangaroo pumps, ventilators, chemotherapy, and other high-tech treatments. Families are as dedicated as home care agencies about keeping patients at home, often until death. AD that patients and families are asking is for a place to turn for teaching, advice, support, and respite as 44

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SPECIAL PERSPK=IVES ON HOME AND COMMUNITY CARE 45 they expend superhuman effort to provide care. Yet the programs that have evolved to meet their needs and to help Hem are like a maze in the effort to obtain the resources. Many families give up in frustration until, completely overwhelmed and in crisis, they come to the attention of the system. PROGRAMS FOR HOME CARE Medicare is the program that older Americans and families believe win provide them with home care coverage. But like aD services that meet real needs, home care is growing too quickly. Although home care is only 5 percent of the national health care budget, it is me fastest growing area, and therein lies He dilemma. How does Medicare provide services yet cut costs when Medicare has Educed allowable visits, and consequently the amount, frequency, and duration of services have been drastically affected? Many services cannot be provided at ad for certain diagnoses, or are aDowed for such short duration Hat the interdisciplinary benefits of home care are reduced. I know that health care costs must be considered, but are we looking at the wrong end of the problem? Should we, instead, be looking at out national health care policy, as weld as the effects of me policy? Because heal care policy reflects how our medical care should be provided, when, by whom, and how it is going to be paid? One misconception of the present policy is that home care is cheap. Home care is not cheap. Individualized attention given in the patient's home by a highly skiBed professional team does not sound inexpensive to me. Although research is limited and sometimes conflict- ing, it would appear that me benefits of home care are to reduce hospitali- zation. That is the contribution of home care to cost containment. One of He solutions is to conduct research to see what home care really gives us for our dollar, and then we must decide if and how we want to pay for it. We may be able to arrange benefits for the results we want, but, what if home care just makes people happier? Are we willing to pay for happi- ness with our tax dollar? I would like to see our academic institutions and our home care agencies link their expertise and produce research on home care, but neither group can afford to do it without financial assistance or incentive. I hope that money will be put into research in the future instead of into huge regulatory systems, which probably cost as much as they save and drive dedicated professionals out of home care.

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46 SUSAN A. WALTER HOME CARE PROFESSIONALS Who is providing the care? I assure you mat programs that were developed to help families are not doing so. Not because they do not want to, but because the demand is so great for the service offers that the program can neither staff nor budget sufficiency for He demand. So, they Limit their services by limiting eligibility or the amount of service pro- vided, until families feel that they cannot get help anywhere or that help is too little, too late. Case management is touted as a solution, but when the case man- ager is overwhelmed win cases, the family still cannot get the individual attention it needs. ~ would like to see families paid a stipend for providing care. Then, Hey would have the funds to pay for additional help, if needed' which they could purchase in the marketplace; Hey would regu- late the care through their purchasing power. This solution recognizes changes in He family structure such as families win unmarried heads of household or two-career families in which the members cannot afford to leave their jobs without getting recompensed or obtaining financial assis- tance to pay others. If the patient is not cared for at home, the taxpayer ends up paying anyway. CASE STUDIES Although this is a difficult time for home care and the frustrations are many, it is still a most exciting field. It is because of He patient who uplifts us every day. For this reason, I would like to close win the stones of two patients. The first case, that of Mr. and Mrs. L., came to our attention because their church group was concerned about their care needs. They had no children and the relatives were distant. Mr. L. was chairbound due to a stroke. Mrs. L. was senile and could not remember to feed her husband, get food, or let He dog out regularly. Their church asked if we would come in because every other home care agency had been fired by the couple. ~ did not think that we would last much longer than any other agency, but we were able to keep them at home for two years and to help them make long-term plans. They finally went into a nursing home at the end of two years, but it was their own decision, made because the husband knew that he was dying and he wanted to be sure that his wife was cared

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SPECIAL PERSPECTIVES ON HOME AND COMMUNITY CARE 47 for. This story demonstrates how complex home care is and how much service agencies must provide if there is no family to help. In the two years Hat we kept Gem at home, we did aB their haircutting; we arranged for medical care; we helped repair appliances; we arranged for bee extermination, tree removal, medical services and kennel care for the dog, nag cleaning, and holiday and birthday celebra- tions; we found lost articles Cat they thought had been stolen; we coordi- nated the RN shifts of the home heady aides, therapy, and doctors. If they had had family, the family would have done this. Mr. L. seemed to be close only to people he could verbally fight with, which caused anxiety to the staff. So, ~ would go once a month and fight with him so Mat he would not pick on my staff. At the end of the fight, he would wink at me, and say, "Thanks for coming, Ms. WaLker. It was really good," and that would be me end of it for another monk. After serious bronchial infection and hospitalization Mr. L. de- cided that he and Mrs. L. needed to enter a nursing home because he was beginriing to fail. We arranged, Hugh the courts, for the appointment of a guardian who would look after Heir interests. We worked win a real estate agent to help seU their house and men to invest their money so Hat they would have money for the facility they wanted. We helped place Mr. and Mrs. L., the dog, and some other favorite possessions in the nursing home. This is another value of home care He time to plan wed for a patient. Although bow Mr. and Mrs. L. died within 6 months of place- ment,: they achieved their wish of rema~rung at home as long as possible. The second case demonstrates that you can provide home care, even if you do not have an adequate family. This is a case of an elderly gentleman, an Immigrant from Russia, who had a schizophrenic son. When I became involved it looked as if me man was going to need nursing home placement, but the son and the faker were so close that we had to separate the care needs to ensure Hat Hey could both maintain themselves independently. When we did that, bow began to thrive. Now, the father is in remission and doing wed. The son is in a vocational training program and looks better than he has ever looked; ~ think that he will be able to stand on his own as time goes on. Finally, it is important to emphasize that both of these patients needed a lot of special, individual attention, and we could provide it only because we had a special grant for cases of this sort. Medicare was not an adequate source of reimbursement.