Augusta Robello was 86 years old when she learned she had Parkinson's disease. This diagnosis meant a progressive loss of coordination and an increasing need for assistance with Activities of Daily Living (ADLs). Fortunately, Mrs Robello was already living in the home of her 66-year-old daughter, Frances Ally. The Allys told Mrs Robello not to worry; they would care for her at home for the rest of her life.
As Mrs Robello became more unsteady on her feet, she became more hesitant to walk and to help herself. Her decline in activity led to deterioration of muscle tone, bone structure, and motivation.
Soon Mrs Robello needed help with most ADLs - bathing, dressing, walking, and transferring from the bed to the commode and chair. On bad days, she could not even feed herself. But on good days, Mrs Robello was alert, conversational, and glad to be living at home. Her favorite pastime was a good game of cards with the family.
After a series of hospitalizations in the fall of 1984, Mrs Robello was virtually bed bound. The floor nurses told the hospital discharge planner that the Allys would need regular help with Mrs Robello's home care. A referral was made to a relatively new program in Hawaii called Nursing Home Without Walls (NHWW). This program provides health and social services to Medicaid recipients of any age who are certifiably in need of nursing home care, but who wish to receive long-term care services in their homes. NHWW assesses the patient's needs and arranges the delivery of services to meet those needs. NHWW encourages the continued involvement of the patient's family and friends, but supplements their activities with services that maximize the patient's safety at home. The common goal of patient, family, and NHWW is to prevent or delay institutionalization of the patient.
The services provided by NHWW include case management, day health care, emergency alarm response system, environmental modifications, habilitation services, home maintenance, homemakers, home-delivered meals, moving, nutritional counseling, personal care, respite care, skilled nursing care, and transportation. Any combination of these services can be provided as long as the total cost does not exceed 75% of the average cost to Medicaid of institutional nursing home care. Currently, the cost of a nursing home bed averages $72 a day in Hawaii; thus all services provided to an NHWW client must cost no more than $54 a day.
NHWW uses a medical model because of the fragile nature of the target population. The registered nurse therefore plays a critical role in patient assessment, ongoing health monitoring, and supervision of the paraprofessionals providing direct service. Because the nurse is familiar with the patient and the family situation, he or she often acts as liaison between the patient and the family care givers and the physician. The RN is joined by a medical social worker and a social service aide in a multidisciplinary team that can best assess and meet the variety of health and social problems that face long-term care patients.
Within a week of referral, the NHWW case management team visited Mrs Robello in the hospital to conduct an initial assessment of her health status and home care needs. Specifically, the RN reviewed Mrs Robello's medical and functional conditions and established communication with her physician. The case management team then visited the Allys' home to evaluate it for comfort and safety. They arranged inhome services to assist Mrs Robello's daughter, the primary care giver, with her mother's care. This care plan was authorized by Mrs Robello's physician.
To provide the personal care services specified by Mrs Robello's care plan, NHWW assigned two community health aides to the case. All NHWW aides, including the two assigned to Mrs Robello, are trained by NHWW nurse educators. Trainees receive more than 200 hours of combined classroom and practical instruction. The 150 hours of classroom instruction, demonstration, and practice include skill building in vital signs, first aid, CPR, and home nursing. Under the direction of rehabilitation therapists, students learn transferring skills, range-of-motion exercises, how to assist with ambulation, and how to teach the patient self-help skills. Lecture topics include nutrition, mental health, sexuality, aging, dealing with death and dying, and recognizing illness. Formal instruction is followed by 30 hours of clinical experience in a long-term care facility and 60 hours of paid, on-the-job training in the homes of NHWW patients.
Initially, a community health aide was scheduled to visit the Ally home six days a week from 8 AM to 12 noon. Following the care plan, the aide would wake Mrs Robello, wash her face, rinse her mouth, and transfer her from her hospital bed to a chair. The aide would then assist with medications. At 8:30 AM the aide would prepare a breakfast of soft foods as Mis Robello was edentulous. The aide often assisted with feeding since Mrs Robello had upper extremity tremors symptomatic of Parkinson 's disease. After breakfast the aide would help Mrs Robello with range-of-motion exercises. In midmorning the aide would assist Mrs Robello into the shower, transferring her from her wheelchair to the shower bench. Mrs Robello was encouraged to do as much for herself as possible.
After lunch the aide would clean and organize Mrs Robello's room and launder her clothes and bedding. The aide would supervise Mrs Robello's breathing exercises twice during her visit and assist her with toileting as needed. Routine observations were charted at the end of the shin and unusual findings were reported by telephone to the case managers. When Mrs Robello had a medical or dental appointment, the aide accompanied her in the HandiCab, a proprietary transport service for the handicapped on the island of Oahu. Once the aide became familiar with Mrs Robello's routine and surroundings, Mrs Ally would use the time made available by the aide's visit for personal respite, and to run errands and shop for groceries.
This situation was stable for many months until Mrs Ally's back condition worsened. She was told she needed surgery to repair a hernia and a slipped disk. After surgery she was not to lift anything heavy, including her mother who weighed 110 pounds. Who would care for Mrs Robello while her daughter was recuperating from surgery? Would Mrs Robello have to enter a nursing home?
Through the efforts of NHWW, a family conference involving Mrs Robello's four children and many grandchildren took place. None of Mrs Ally's siblings were willing to take on the responsibilities of caring for their mother in their homes. Despite Mrs Ally's objections, the family decided to place Mrs Robello in a nursing home. Mrs Robello resigned herself to placement. She entered the home and was placed in a room with three other elderly women. None of them could play cards; one was in a coma, one was aphasie, and the third was extremely confused. In fact, very few of the residents at the home were alert or conversant. Mrs Ally and her husband were disappointed with the staff-patient ratio and spent every evening at the nursing home.
Mrs Ally called NHWW to ask for advice and assistance. If her mother came home, would NHWW be able to provide them with enough services to support Mrs Ally? Could NHWW help find aides for hire during evenings and on weekends? The answer to these questions was "yes."
Due to Mrs Ally's disability and the continued progression of her mother's illness, the RN determined that additional persona] care services were needed. Community health aides now visit every weekday from 8 AM to 2 PM and on Saturdays from 8 AM to 12 noon. Mrs Ally pays one of the aides to work an additional five hours on Saturday and eight hours on Sunday. Their duties include taking Mrs Robello's vital signs, giving her a complete bed bath, and assisting with all ADLs. Due to her decreasing endurance, Mrs Robello wants to spend most of her day in bed. The aide, however, is instructed to encourage her to remain out of bed as long as possible.
The case management team continues to visit every two weeks and is available to answer Mrs Ally's questions as they arise. The team social worker counsels Mrs Ally on her feelings about her mother's illness and prognosis, about the now-strained relations between Mrs Ally and her siblings, and about any concerns Mrs Ally may have with NHWW and the services provided. The registered nurse monitors Mrs Robello's physical and medical condition and reports this information to Mrs Robello's physician. Due to her increased debilitation, the physician makes home visits every other month and for emergencies. In addition, an NHWW nurse is on call 24 hours a day, seven days a week, to respond to any NHWW patient, family care giver, or community health aide. With these arrangements, Mrs Ally feels able to manage her mother at home until her mother's death.
The Future of the Program
NHWW was developed by the State Department of Social Services and Housing as a response to Hawaii's growing long-term care population, its chronic shortage of nursing home beds, and the rising cost of providing institutional care, which already consumes 40% of Hawaii's Medicaid budget. Hawaii's NHWW program began serving patients in July J983. In its first two years, 141 patients received NHWW services. Of these patients, 66% were 60 years of age or older; Augusta Robello is one example of the older age group. Thirty percent of NHWW clients were between the ages of 19 and 59; several had spinal cord injuries resulting in paraplegia or quadriplegia. In these cases, the start-up costs of purchasing adaptive equipment, making modifications to the home and training the patient and care giver were high. The program also served five handicapped children, aged 18 or younger, providing services to help parents handle the physical and mental stresses of maintaining their disabled child at home. Overall, 80% of the patients served in the first two years were unmarried, 27% required skilled nursing care, and 45% were referred from hospitals or other institutions.
Medicaid's purpose for supporting home- and community-based programs is to demonstrate that home care can be a cost-effective and quality-care alternative to institutionalizing long-term care patients. The results after the first two years of operation show this to be true. The cost per patient day of NHWW care was 61% of the average cost of institutional care. This represented an approximate net savings of $520,000 for the Hawaii Medicaid program over the two-year period.
Based on these findings, the 1985 legislature reauthorized NHWW as a demonstration project for another two years (7/85-6/87). Additional funds were earmarked to increase the number of patients served in the city and county of Honolulu and to establish NHWW programs on the neighbor islands of Maui, Kauai, and Hawaii.
Funding was also provided to evaluate NHWW patient outcomes. In this study, 49 newly admitted NHWW patients were matched on age, an orientation score, and a physical function score with patients newly admitted to nursing homes.
After 3 months, NHWW patients improved in more activities of daily living and mobility items than did the nursing home patients. Specifically, the NHWW patients improved in toileting, transfer, continence, walking, and going outside while the nursing homes patients improved in toileting and walking only. In addition, the NHWW patients were significantly more likely to say that they were happy and that they did not want to live elsewhere. They were more likely to have a private room, have contact with children, to identify people that they could count on, and have a task or a role in the placement. Nursing home patients were more likely to express worry about their future care. Chart reviews also showed that patients in both settings had similar types and frequencies of illnesses and falls.
Positive feedback has also come from family care givers of NHWW clients. For example, Frances Ally says, "I couldn't have taken by mother home without the NHWW program. I am so thankful for their physical and monetary support as well as for their understanding and guidance. We are all happier this way ... my mother loves being home. I feel better knowing she is getting as much attention as she wants, and the state saves money too."