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Home and Community Care of the Elderly: System Resources and Constraints John H. Mater Approximately 20 to 30 percent of the users of long-term care, exclud- ing the mentally infirm, are disabled persons who had a preexisting physical injury. Two hundred thousand individuals have spinal cord injuries in the United States. Of these, about one-third are quadriplegics and about 5,000 are quadriplegics who are ventilator-dependent and insti- tutionalized, each clearly needing long-term care. About 350 veterans have no limbs, and without four limbs these persons are going to be chronic users of long-term care. It should come as no suppose Hat in two surveys of He membership of the Paralyzed Veterans of America (PVA) in the past 3 years (of about 25,000 quadriplegic and paraplegic veterans), the number one health issue was long-term care. REHABILITATION One of He most important goals of He PVA is to achieve and maintain the maximum level of functional independence for our member- ship. We must consider the role of, and He optimum balance between, the formal versus He informal care system. The key issue for those who already have physical disability is rehabilitation. Rehabilitation, for the most part, often becomes a debate between maintenance or restoration. Paraplegic veterans go through an active period of restorative rehabilita- tion, but once it ends, they seek and need maintenance rehabilitation. These persons are very concemed, for example, about the quality of the cushions in their wheel chairs because it might determine whether they win get decubitus ulcers, which win put them back into an institution. 62

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HOME AND COMMUN17Y CARE: SYSTEM RESOURCES AND CONSTRAINTS 63 SUPPLEMENTAL VERSUS SUBSTITUTE CARE The issue of financing centers around whether financing should be directed toward a service or support of He individual. This might mean, for example, a cash benefit for disabled veterans that win enable them to purchase their own care. Should financial resources support supplements or substitutes? Human Aides The first problem is finding aides. In 1987, the PVA completed a study of independent living and He availability of aides. We found that older paraplegics have more difficulty in obmin~ng needed aides than younger ones. This seems to be a rather poignant issue of attitudes and rejection of aged paraplegics and quadriplegics. Animal Aides The second problem of supplements versus substitutes relates to nonhuman-aides—capuchin monkeys. Dr. M. I. WiBard has mined capuchin monkeys to take care of quadriplegics in Heir home. We know that this represents supplemental care because the family comes home after work and puts the monkey in the cage. The monkey represents a supplement during regular working hours form of respite care for the family. One fascinating aspect of the monkeys is that Hey represent a means of socialization for the quadriplegic in the home. The animal becomes the Elk of the neighborhood, and suddenly, the monkey's pres- ence not only becomes a supplement in a medical sense, but also helps in putting this person back in He community. For us, and for aging spinal- cord-injured quadriplegics, this is a very important issue. About 650 quadriplegics in this country could use capuchin monkeys. Exactly 6 have been placed, and each of Rem was funded though He good offices of venous foundations. Physical Technology Taking away He wheels of a spinal cord paraplegic is a very serious issue. Wheel chairs, robotic arms, the use of computers, and the

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64 JOHN H. MATHER use of prostheses are aU veer important parts of maintaining a person at home. We know of many instances of persons who, literaBy, cannot get their wheel chairs fixed and must, as a substitute for home care, go back into the hospital. For disabled persons the physical technology represents a way of continuing Heir long-term care support, but not in a way that forces them to be institutionalized. ECONOMIC CONSEQUENCES OF SPINAL CORD INJURY We have initiated a study at Rutgers University that win look specifically at the issue of the economic consequences of spinal cord injury. The study win investigate such problems as: What is the burden of illness represented by talking away a physical technology that an individual used to have? What is the cost of losing your wheel chair? What is the cost of not having a suitable cushion so you win not get decubitus ulcers? Part of the Rutgers study concerns the cost savings of commun~ty-based care—What is the cost avoidance and what is the cost effectiveness? Dr. Kane said, "Let us define effectiveness first, and then we can deal with the rest." That may work for some, but we cannot wait to define effectiveness. Policy decisions need to be made about costs and reimbursements every day. Part of Be solution to providing long-tenn care lies in the willingness of policymakers to accept a spectrum of personal care services and health-related services, not all of which con- form to the medical model, for the physically disabled individuals who are now moving into their later years. ' See Robert ~ Kane, "Home and Community Care of the Elderly: Framing the Issues," in this volume.