Readings in Independent Living A Preview of Independence & Transition to Community Living: The Role of Independent Living Centers ILRU/NCIL National Training & Technical Assistance Project 1998 ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 713.520.0232 (V) 713.520.5136 (TTY) 713.520.5785 (Fax) Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred. ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, free-standing medical rehabilitation facility for persons with physical and cognitive disabilities. TIRR is part of TIRR Systems, which is a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. A Preview of Independence & Transition to Community Living: The Role of Independent Living Centers Editor's Note In summer 1993, ILRU initiated a study of how centers could assist consumers to move from nursing homes and into the community. We asked Bonnie O'Day to take the lead in conducting this important study, which consisted of --identifying centers currently providing such transitional services, --reviewing the literature and legislation and convening a focus group of center directors and service delivery staff experienced in providing assistance in this area, --selecting and conducting in-depth interviews with staff of centers with substantial involvement in assisting consumers to move out of nursing homes, --and writing a report which summarizes her findings and presents a set of recommendations for increasing services to this group of people, whom our friends at ADAPT would call our incarcerated brothers and sisters. We are taking this opportunity to give you a preview of findings from the study while the monograph is being printed. This month's preview features background information on why centers should make assistance to people living in nursing homes a centers-wide priority. Next month, we will preview the portion of the report addressing recommendations for increasing transition to community living services. Background Since the beginning of the disability rights movement, a major thrust of independent living centers has been to enable individuals with significant disabilities to leave nursing homes and to live independently in the community. Significant gains have been made in closing state institutions, and in many locations, nursing-home placement is no longer seen as the only option. Currently, about 80 percent of elders who have some type of disability are living in the community. Over two-thirds of these individuals live in single family houses and over one-third live with a spouse (Leutz, Capitman, MacAdam, & Abrahams, 1992). Nursing Home Demographics On the other hand, both data reported in the literature as well as anecdotal evidence suggest that approximately 1.9 million people of working age and older still live in long-term care facilities and nursing homes. The Institutional Population component of the 1987 National Medical Expenditure Survey found roughly 231,000 users of nursing homes who are under age 65, representing 10.3 percent of the total nursing home population. The number of male and female nursing home residents reflects the distribution of the general population in contrast to residents 65 and older, where women constitute the vast majority (71.8%) of nursing home residents. This survey also reveals that younger nursing home residents (between the ages of 18 and 55) are predominantly single or divorced (about 83%) and contain a higher percentage of blacks than are represented in the larger community (20% as compared with 11.8%). More than 36 percent of nursing home residents in this age group have disorders of the central nervous system, such as cerebral palsy, multiple sclerosis, paralysis, or epilepsy. Over 34 percent are diagnosed with psychoses, including organic brain disorders, 33.9 percent have nonpsychotic mental disorders, and 23.5 percent are classified as mentally retarded (Lair, 1992). About 100,000 people still live in intermediate care facilities for the mentally retarded (ICF/MR)-- institutions with more than 16 residents. About 38,000 people with mental retardation or developmental disabilities (MR/DD) live in Medicaid-financed nursing facilities, approximately the same number as in 1977 (Mangan, Lakin, & Prouty, 1995). Not surprisingly, most residents come to the nursing home from another facility. Only about one-third of nursing home users between the ages of 18 and 54 move from independence in the community to the nursing home. About 12 percent come from retirement centers, group or boarding homes, or the street. The rest come from hospitals, other nursing homes, state institutions, or other health care facilities. On average, the length of stay in a nursing home for this age group is approximately 6.2 years. A shocking 20 percent of residents aged 18 to 54 have been institutionalized for ten years or more (National Medical Expenditure Survey, 1992). Cost: Nursing Homes Vs. Community Living Institutionalization is the most expensive form of long-term care offered to elderly and disabled Americans. Annual institutional costs per person range from $30,000 to $60,000, while the annual costs of in-home services are estimated by Nosek and Howland (1993) to be $8,000 to $15,000 and by ADAPT (1995) to be about $27,000 for people who use 24-hour care. Even people who require assistance from a ventilator and need intensive in-home services can live more cheaply in the community. According to one study of 20 ventilator-dependent individuals, institutional costs were 274 to 304 % greater than community placement. Daily institutional costs were $648 to $719 per day, while community placement costs, including personal assistance services (PAS), equipment, transportation, prescriptions, SSI, and rent supplements were $134 to $312 per day (Bach, Intintola, Alba, & Holland, 1992). The relatively poor cost-effectiveness of nursing homes as compared to community living is demonstrated by the following real-life situations of people with significant disabilities: A married couple living in a nursing home was unable to move into the community simply because funds to make an apartment wheelchair accessible were not available. For lack of a one-time investment of a few thousand dollars, the couple was forced to live in a dependent situation which cost the state tens of thousands of dollars annually. An elderly man was placed in a nursing home because he was unable to cook meals for himself. This was his only functional limitation (Nosek & Howland, 1993). Despite this overwhelming evidence of cost savings, federal financial arrangements encourage the use of nursing homes when other types of care may be more appropriate. Medicaid covers nursing home costs, but may not pay for PAS, homemaker/chore services, home modification for accessibility, or adaptive equipment. These policies unnecessarily force people into skilled care facilities purely for financial reasons. As Leutz states, . . . resources are too often mis-allocated toward expensive tertiary care and life support to the neglect of primary prevention, public health, and basic social supports. Medicare will spend small fortunes for aggressive acute care for 85-year-olds; Medicaid will do the same to keep an individual alive for years in a vegetative state; but help is unlikely to be available for an overburdened, aging woman struggling to lift her disabled husband from a bath. Our public and private insurance systems pay for expensive machinery that substitutes for failing kidneys, lungs and hearts, but they are not yet ready to pay for a simple service that may substitute for a failing or absent family caregiver. Leutz, et al, 1992 Numerous studies also demonstrate the detrimental effects of nursing homes on individual well-being. Physical and mental functioning may deteriorate (Avorn & Langer, 1982), and dependency tends to increase. One study examined 341 nursing home residents with developmental disabilities to compare changes in functioning among individuals who moved into the community with those who stayed in the nursing home. This two-year study found that residents who moved into community settings experienced significant health benefits, while those who remained in nursing homes experienced deterioration or no significant changes. Decreases in anemia, obesity, overall health problems, number of days of hospitalization, and mobility limitations were observed among those who left the nursing home. Persons who remained in the nursing home experienced increased speech impairment, circulation disorders, and level of adaptive functioning (Heller, Factor, & Hahn, 1995). Most people strongly prefer to stay at home rather than enter a nursing home or other form of institutional care (Zedlewski, Barnes, Burt, McBride, & Meyer, 1989). Nursing home or institutionalized living that allows little opportunity for self-determination has been shown to have a strong negative impact on life satisfaction (Vallerand, O'Conner, & Blais, 1989). But, moving from nursing homes or remaining in the community after onset of a disability is a formidable challenge requiring considerable planning, problem-solving, and emotional fortitude. People who wish to move from institutions into the community face a wide array of obstacles, including lack of PAS, social stigma, inaccessible housing, lack of independent living skills, few financial resources to make the move, and inadequate transportation. Inadequacy of support systems in place to allow for comfortable and safe community living makes the move impossible for many citizens. However, people who have made a successful transition from residential care and nursing homes to independent community living express a sense of greater well-being, have lower costs associated with care, and are more involved in community activities than those who remain nursing home residents (Nosek & Howland, 1993). The Role of Centers As increasing numbers of people with significant disabilities live independently and as more institutions are closed in favor of community options, some centers have turned away from persons still in nursing homes or institutions. One reason for this trend might be that only three percent of people with spinal cord injuries, the original independent living constituency, are placed in nursing homes today; the percentage was much higher in the past (Berkowitz, Harvey, Greene, & Wilson, 1992). Today's nursing home population is more severely disabled than in the past and requires a broader and more complex array of services and supports to live independently. Another problem is that most residents of large, state institutions have mental retardation--a disability group that historically has been underserved by independent living centers. But, as Jerry O'Bryan, board member and former peer counselor for the Endependence Center of Hampton Roads explains, "Nursing home residents have just as much right to center services as people already living in the community. People in nursing homes tend to have the least financial resources of anyone in our society; many have no family or social supports. They need the gamut of independent living services, especially advocacy. If centers are not serving this population, we are not truly living up to our mission." The testimony of Harry Richardson brings the dependence, degradation, and frustration of institutional life into clear focus: I am 67 years old and have cerebral palsy and have been in an institution since I was ten years old. . . . My wish to leave the nursing home is finally coming true. I am going to get out of the nursing home in a week. I wish they would close the nursing home. I have seen with my own eyes many things. Someone at the nursing home recently asked for help, and the staff said they were busy. . . . Sometimes the staff won' t get me out of bed, and won't help when I have passes to leave the home. A driver wouldn't take me to a movie . . . I still have problems, and sometimes I have to wait ten minutes for an elevator, [and I miss my ride] because the staff won't take me on time. I don't think that it is right that I have to pay [for my transportation], even when I miss my rides. I always have to wait until they take me. . . . This won't happen when I have my own attendant. In the nursing home, there is no freedom for me. There are no services available for people like me. I sued the state on my behalf and others. Now, I will have my own apartment and my own attendant, and my dream is finally coming true. There are many people, including many not as disabled as myself, who are still waiting for attendant care services. This is why we need home and community based attendant care services so that people don't have to spend their whole lives in a nursing home--so people can have a choice of living. Home and community based care will allow us to attain and have personal freedom. It will mean that people in nursing homes will have an opportunity to make their dreams a reality. National Council on Disability, 1994 Independent living centers can be a vital link for people wanting to move from long-term rehabilitation facilities into community settings. By providing information and referral about resources in the community, peer counseling, independent living skills training, individual and systems advocacy, and assistance in obtaining accessible housing and PAS, centers enable hundreds of individuals with severe disabilities to leave custodial care for independence in the community every year. Although centers have a long history of successful advocacy and service in this area, little information is available about the extent to which centers assist people in making the move and about what services contribute to a successful transition to community living. Surprisingly, "how-to" information to assist centers in establishing successful transitional efforts is scarce. As part of its research and training center, the Independent Living Research Utilization (ILRU) Program initiated a study of the "state of the art" of center-based transitional services to support community entry for people with significant disabilities. The purposes of this project were: --to obtain information on exemplary approaches being used by centers to assist people with disabilities in making the transition from long-term rehabilitation facilities to community living, and --to provide centers around the country with appropriate information and technical assistance to assist them in providing transitional services in an effective manner. A major focus of the project was to determine the extent to which programs exist to help people with significant disabilities make a transition into the community. The outcome was a monograph, which highlights the "best practices" of six centers and examines policy barriers that inhibit community living. You will no doubt wish to order the complete report, Independence & Transition to Community Living: The Role of Independent Living Centers. It contains an overview of the need for community-based and transitional services, a brief background of the project methodology, and a review of several pieces of legislation which have dramatically affected the ability of people with the most significant disabilities to live in the community. It then presents a brief overview of transition services provided by centers, followed by a discussion of major policy barriers that keep people in institutions. Next, an in-depth examination of exemplary programs at six independent living centers that help people move or stay out of institutions is provided. Finally, it concludes with recommendations to centers that will assist them in establishing effective programs. You will soon receive an announcement on how to order the complete report. The IL NET is a collaboration of Independent Living Research Utilization (ILRU) Program and the National Council on Independent Living (NCIL), and organizations and individuals involved in independent living nationwide. Now entering its second three-year funding cycle, the IL NET is building on its strong foundation to address the spectrum of needs expressed by centers for independent living and statewide independent living councils. The mission of the IL NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field. For additional copies of this document, contact ILRU at 713.520.0232 (V), 713.520.5136 (TTY), 713.520.5785 (fax) or email at ILRU@ilru.org, or download it from our Web site at http://www.bcm.tmc.edu/ilru/ilnfaqs.html. June 1998 by the ILRU Program.