INDEPENDENCE AND TRANSITION TO COMMUNITY LIVING: THE ROLE OF THE INDEPENDENT LIVING CENTER by BONNIE O'DAY ISSUES IN INDEPENDENT LIVING A publication of the ILRU Research & Training Center on Independent Living at TIRR 1999 by ILRU Program 2323 S. Shepherd, Suite 1000 Houston, TX 77019 713.520.0232, 520.5136 (TTY) ILRU PUBLICATION TEAM: Carri George, Rose Shepard, and Dawn Heinsohn. Substantial support for development of this publication was provided by the National Institute on Disability and Rehabilitation Research and 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. Dedication To Wade Blank, who devoted his life to freeing people with disabilities from incarceration in institutions to enjoy the liberty to live and work in the community. and To Jerry O'Bryan, who through personal example and peer support helped dozens of people with disabilities move from nursing homes to independence in the community. Foreword While great advances have been made in the last decade, disability rights and independent living advocates concur that numerous barriers remain which keep people with disabilities from living independently in their communities. None can lay a greater claim to our attention than people living unnecessarily in nursing homes. Too many people are in nursing homes because they do not have the very modest support which would allow them to live in their own homes. This absence of support can be attributed to community deficiencies, such as lack of accessible housing and lack of sufficient funding for personal assistance services, as well as to individual deficiencies, such as lack of adequate independent living skills, reluctance to take such huge risks, and lack of family support. And, it must be acknowledged, lack of leadership and aggressive action on the part of many independent living centers and disability-focused organizations. We in the independent living field need to examine our values as well as where we are investing our energies. What are we putting in front of assisting people to leave nursing homes? No question that this is hard work and that there are numerous fronts on which battles must be fought--with nursing home administrators, with over-protective family members, with well-placed apprehension on the parts of the individuals, with state and federal legislators to obtain adequate funding for PAS, with local authorities to assure that adequate housing is available, and with exquisite planning on the part of the center to assure that services are in place, staff are prepared, and fall-back positions are established. In this document, Bonnie O'Day has done her usual excellent job in providing a concise overview to the extent of problem. In so doing, she describes six centers across the country which have successful transitional programs, and she closes by presenting a thoughtful set of policy issues. For those of you under-engaged in fighting this good fight, we hope that this document will lead you to considering the role your organization can take in this campaign. For those of you already involved, let us, as a research and training center in independent living, know what we can do to support your efforts. Laurel Richards, Editor ILRU Issues in Independent Living Acknowledgments Integral to the success of this project was the creation of a project advisory committee. This dedicated and hard-working group of individuals provided inspiration and encouragement throughout the project. They insured that this monograph represents the knowledge, diversity, and needs of the independent living field by forwarding relevant legal and scholarly materials, selecting exemplary programs to be highlighted, and reviewing draft manuscripts. The committee consisted of the following individuals: Kay Stambler Department of Mental Retardation South Burlington, Vermont Steve Brown Institute on Disability Culture Las Cruces, New Mexico Art Humphrey Great Lakes Center for Independent Living Detroit, Michigan Elizabeth Gamble ADAP/PAIR Program Tuscaloosa, Alabama Laurel Richards ILRU Houston, Texas Jerry O'Bryan ENDependence Center of Hampton Roads Virginia Beach, Virginia Additionally, I wish to acknowledge the following individuals who took several hours from their crowded schedules to explain their programs, to review drafts, and to forward relevant documents. Carol Kinney Executive Director Wyoming IL Rehabilitation, Inc. Casper, Wyoming Paul Melvin Director of Participant Services ENDependence Center of Hampton Roads Norfolk, Virginia Linda Staroscik Program Manager for Transition Services Liberty Resources, Inc. Philadelphia, Pennsylvania Kathy Uhl Executive Director Independent Living Resource Center San Francisco, California Mike Oxford Executive Director Topeka Independent Living Resource Center Topeka, Kansas Bonnie Page Executive Director Amsterdam Independent Living Center Amsterdam, New York Carol Patterson Program Director IL Resource Center San Francisco, California Table of Contents Introduction Nursing Home Demographics Cost: Nursing Homes Vs. Community Living Methodology Relevant Legislation (and Court Cases) The Omnibus Budget Reconciliation Act of 1987 Medicaid Home & Community Based Services Waiver Program Rights Protection The Americans with Disabilities Act (ADA) Overview of Transition Services Provided by Centers Highlights of Center Programs Policy Barriers Housing Policy Recommendations Personal Assistance Independent Living Model Policy Recommendations Service Approaches Formal Mechanisms Consumer-Directed PAS Programs Characteristics of the Service Area and Population Disability Population Centers with Innovative Approaches EXEMPLARY PROGRAMS Endependence Center of Hampton Roads, Norfolk, Virginia Liberty Resources, Inc., Philadelphia, Pennsylvania Wyoming IL Rehabilitation, Inc., Casper, Wyoming Topeka IL Resource Center, Topeka, Kansas IL Center of Amsterdam, Amsterdam, New York IL Resource Center, San Francisco, California Summary Recommendations Conclusion References Appendices A. List of Advisory Committee Members B. Contact Information C. Agreement of Understanding Between Lake Taylor Hospital and Endependence Center, Inc D. Community Services Program for Persons with Physical Disabilities Amended Work Statement About the Author About ILRU Introduction Since the beginning of the disability rights movement, a major thrust of independent living centers (ILCs) 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 However, both data reported in the literature and 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 under age 65, representing 10.3% 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 % 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 % are diagnosed with psychoses, including organic brain disorders; 33.9% have nonpsychotic mental disorders; and 23.5% 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% 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% 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: -- In Houston, Texas, 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). 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 or nonexistent. The Independent Living Research Utilization (ILRU) Program received funding from the National Institute on Disability and Rehabilitation Research (NIDRR) to examine the "state of the art" of 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 this monograph, which highlights the "best practices" of six centers and examines policy barriers that inhibit community living. The introduction to this monograph has provided an overview of the need for community- based and transitional services. After a brief background of the project and its methodology, this monograph reviews several pieces of legislation which have dramatically affected the ability of people with the most significant disabilities to live in the community. A brief overview of transition services provided by centers is presented, followed by a discussion of major policy barriers that keep people in institutions. Next, an in-depth examination of six exemplary programs that help people move or stay out of institutions is provided. Finally, this monograph concludes with recommendations to independent living centers that will assist them in establishing effective programs. Supporting documents and a list of "experts" on providing transitional services to contact for further information or technical assistance is contained in Appendix B. Methodology The first step in this project on transitional services was creation of an advisory committee composed of persons knowledgeable about independent living, long-term rehabilitation, and community support services. (See Appendix A for a list of advisory committee members with contact information.) The committee reviewed the overall project plan, assisted in developing questions for a survey instrument to be administered to centers, and selected exemplary programs to be highlighted in the monograph. The committee also reviewed the interview guide and the final draft of this monograph. A focus group, consisting of ten center executive directors and service staff, was convened at the National Council on Independent Living (NCIL) conference in May 1993. The focus group was announced at the annual NCIL luncheon with most conference participants present. The purpose of the focus group was to obtain additional input for the survey of centers and to highlight policies and implementation practices that either promote or hinder efforts to assist people in making successful transitions from institutions to the community. In July of 1993, ILRU sent a brief three-page survey to all its directory of centers in the U.S. to obtain an overview of how centers were "springing" consumers from nursing homes into the community. The survey asked centers to explain services offered and how these services were funded, to describe formal and informal relationships with nursing homes or other institutions, to highlight specific efforts to serve minority populations, and to list major problems people with disabilities face in making a smooth transition to the community. The top two problem areas identified by centers in the mail survey (lack of accessible, affordable housing, and inadequate PAS) are analyzed in this monograph. Analysis is based upon a literature review, legislation and other legal documents, and interviews with center staff and other leaders of the independent living movement. Based upon these responses, six exemplary programs were selected for further study. The exemplary programs contain a cross section of centers including large and small centers, those serving urban and rural areas, and those with formal contracts with state agencies to provide transitional services, as well as those which provide services more informally. Project staff interviewed each executive director or other center personnel by telephone. Interviews lasted one and one-half to two hours each, not including follow-up telephone calls to obtain additional clarification. Persons interviewed had an opportunity to review the final draft of their chapters in the monograph for completeness and accuracy. Relevant Legislation (and Court Cases) The purpose of this section is to provide a brief overview of legislation relevant to assisting people with transition out of nursing homes or institutions and with acquiring support services necessary to live in the community. Four primary items will be covered: The Omnibus Budget Reconciliation Act of 1987, the Medicaid Home and Community Based Services Waiver, civil rights legislations, and the Americans with Disabilities Act (as it relates to independent living services). The Omnibus Budget Reconciliation Act of 1987 P.L. 100-203, known as OBRA '87, contains the "nursing home reform amendments" (Title IV, Subtitle C), to assure appropriate and quality care for nursing home residents. This legislation substantially revises statutes governing the operation of Medicare- and Medicaid- certified nursing facilities. Among the Act's provisions are requirements to eliminate inappropriate placement of people with mental illness, mental retardation, and other related conditions in Medicaid-certified nursing facilities. ("Other related conditions" are defined as severe, chronic disability which is attributable to cerebral palsy, epilepsy, or any other related condition closely related to mental retardation; is manifested before age 22; is likely to continue indefinitely; and results in substantial functional limitation in three or more of the following areas of major life activity: self-care, understanding and use of language, capacity for independent living, mobility, self-direction, and learning.) Specifically, each state participating in the Medicaid program must: -- establish a pre-admission screening program to prevent people with the above conditions from being admitted to nursing facilities when such facilities are unable to serve them appropriately; -- establish an annual program to review needs of all nursing facility residents with the above conditions and determine 1) whether or not they are appropriately placed, and 2) whether or not they require specialized services; and -- take steps either to transfer inappropriately served nursing facility residents to other residential settings or, if the person has resided in the nursing home for more than 30 months and wishes to remain in this setting, insure that he or she receives specialized services related to the disability. The final regulations implementing this legislation were published by the Health Care Financing Administration (HCFA) on November 30, 1992. Sometimes referred to as the "Preadmission Screening and Resident Review" (PASSAR), these regulations mandate interagency agreements between the state mental health, mental retardation, and Medicaid agencies delineating roles and responsibilities in meeting these requirements. These regulations also make clear that PASSAR requirements apply to anyone with mental retardation, chronic mental illness, or other related conditions, who requests admission or resides in a nursing home, irrespective of the source of payment for services. In other words, the requirements apply to all such individuals, not just Medicare or Medicaid recipients. The regulations exempt individuals who enter the nursing home from a hospital and who are expected to require less than 30 days of treatment. The state mental health and mental retardation agencies can delegate PASSAR evaluations, as long as the entity is not affiliated with a nursing home and as long as the state agency maintains ultimate responsibility for oversight of the process. For each nursing home applicant or resident, the evaluator must assess whether or not the individual's needs can be met in the community or whether or not the individual requires in- patient care. In making this determination, the individual's physical and mental status and functional capabilities must be considered. If in-patient care is required, the evaluator must also consider whether a community-based mental health or mental retardation group home setting would be more appropriate. If the individual is found not to need residential care, he or she may not be admitted. A written pre-admission screening must be made within an annual average of seven to nine working days of the request for admission. The annual review must be conducted every fourth quarter of residence. Annual reviews must assess whether or not a resident needs nursing home-level services and specialized services for mental illness or retardation. If the individual needs nursing home-level care, the resident can remain in the nursing home. If the individual needs additional specialized services, the state mental health or mental retardation agency is required to provide or arrange such services. If the individual needs neither nursing home care nor specialized services, the state agency must arrange for a safe and orderly discharge of the resident. When a resident has lived in the nursing home for 30 consecutive months, the state agency must offer the resident the choice of remaining in the facility or of receiving services in an alternative setting and must inform the resident of the non-institutional services provided under the state's Medicaid waiver plan. Regardless of the resident's choice, the state must arrange specialized services appropriate to the resident's needs. If the resident has lived in the nursing home for less than 30 months, the state agency must arrange for a safe and orderly discharge and must provide specialized services. The state agency determines what is provided under the rubric of "specialized services" and must delineate a listing of these services in the state plan. The state Medicaid agency is required to inform an individual who receives a PASSAR evaluation of his or her right to appeal any decision reached under this process. The individual must be informed of the right to a hearing, the method of obtaining a hearing, and the right to be represented by legal counsel, a relative, or other spokesperson. The OBRA '87 legislation is an essential tool available to center staff for providing support to individuals with disabilities from entering or remaining in nursing homes. However, the effectiveness of this legislation is severely limited by the ability of states to choose which community services they will provide. This issue will be explored further in the next section. Medicaid Home & Community Based Services Waiver Program Section 2176 of OBRA 1981 granted the Secretary of Health and Human Services authority to waive certain Medicaid requirements and to allow states to use Medicaid funds to pay for non-institutional services. Known as the HCBS program, the waiver was designed to provide home and community services for Medicaid-eligible individuals who are elderly, blind, or who have other disabilities, including MR/DD. States must show that, in the absence of home and community-based services (HCBS), these individuals would be at risk of being placed in or remaining in a nursing home or ICF/MR facility. States wishing to offer HCBS must submit a special plan to HCFA that specifies which services will be covered and how and to whom they will be provided. In other words, these plans can restrict eligibility to recipients living in certain geographic areas, to those currently in institutions, or other distinctive individuals. States can choose from an array of services such as case management, PAS, supported work, habilitation, respite care, minor home modification, adaptive equipment, or any other service that a state can show will lead to decreased Medicaid long-term care costs. Recent relaxation of application requirements has induced all 50 states to participate in the HCBS program. States are not required, however, to provide all of these services, so who receives HCBS and which services are provided is determined by each state (Mangan, Lakin, & Prouty, 1995). In 1990, Congress added Section 1930 to the Social Security Act allowing up to eight states to provide Community Supported Living Arrangements (CSLA) to Medicaid-eligible persons with MR/DD. Separate from, but in many ways similar to the Medicaid HCBS program, CSLA does not require proof that an individual is living in or is at risk of moving to an institution. This program is capped at $100 million over five years, to be divided equally among the eight states (California, Colorado, Florida, Illinois, Maryland, Michigan, Rhode Island, and Wisconsin) that submitted successful applications. Approximately 2,000 persons are being served by these innovative programs (Center on Residential Services and Community Living, 1995). Rights Protection Parents won the first rights protection for institutionalized people with mental retardation and mental illness in the lower courts in the early 1970's. Their efforts were primarily focused upon improving conditions in understaffed, overcrowded institutions. First in Alabama as part of a wholesale attack on the state mental health systems (Wyatt v. Stickney, 1971) and later in New York (NYARC v. Rockefeller, 1973), lower courts proclaimed that persons in institutions had a constitutional right to habilitation or at least a right to protection from harm. The court orders resulting from these cases also promoted community services and integration remedies; for example, Wyatt required the state to make every effort to move residents with mental illness from segregated to integrated community facilities. Almost ten years later in Youngberg v. Romeo (1982), the court ruled that persons in state custody had Fourteenth Amendment Constitutional liberty interest in safety, freedom of movement, and training and constitutionally protected rights to "safe conditions," "freedom from bodily restraint, and minimally adequate or reasonable training to insure safety and freedom from undue restraint" (Laski, 1985). The Developmental Disabilities Assistance and Bill of Rights Act of 1975 (42 U.S.C. 6009), further protects the human and civil rights of people with disabilities living in institutions. The Act also created Protection and Advocacy Systems (P&AS) as a condition for states wishing to receive additional funds under the DD Act. This section remains largely unchanged since its inception in 1975, except for the clarification that these rights are in addition to any constitutional or other rights afforded to all persons. The Act enumerates the following rights and protections: -- The right of persons with DD to appropriate treatment, services, and habilitation designed to maximize the developmental potential of the individual; -- Such treatment, services, and habilitation must be provided in the setting that is least restrictive to the individual's personal liberty; and -- Public funds may not be granted to institutions or other residential programs that do not provide appropriate treatment, services, or habilitation or that do not meet certain minimum standards. The standards include: provision of a nourishing diet, appropriate and sufficient medical and dental care, prohibition of use of physical restraints unless absolutely necessary (but never for punishment), and prohibition of the use of excessive chemical restraints. Developmental Disabilities Act, Section 110 These findings, which are not legally binding but provide guidance to service providers, recognize that the dependent nature of many persons with developmental disabilities puts them at greater risk of inhumane treatment by service providers. Similarly, the Protection and Advocacy for Individuals with Mental Illness Act of 1986 (PAIMI) extends parallel protections to mental illness survivors. P&AS assist individuals whose rights are violated under both pieces of legislation. The P&AS can pursue legal, administrative, and other appropriate remedies to insure that people with DD or mental illness are protected. In 1994, the Protection and Advocacy for Individual Rights (PAIR) provisions of the Rehabilitation Act were federally funded, allowing P&AS to serve people not eligible under other protection programs and to extend advocacy efforts to combat employment and housing discrimination. Taken together, these laws provide powerful protection from abuse and other rights violations for people with disabilities. The Americans with Disabilities Act (ADA) The ADA is the strongest piece of disability civil rights legislation ever passed in the United States, extending equal employment and nondiscrimination protection to people with disabilities. Under the ADA, all state and local governments must meet program access standards and must serve people with disabilities in the most integrated settings possible. Additionally, the ADA provides that places of public accommodation, such as hotels and grocery stores, go beyond nondiscrimination to make "readily achievable" access modifications to their facilities. The ADA also requires that all common carriers provide interstate and intrastate telecommunications relay services to those individuals with speech and hearing impairments unable to use the standard telephone (Burgdorf, 1991). On January 31, 1995, the Third Circuit Court of Appeals delivered one of the most far- reaching decisions in the ADA's short history. Idell S., the plaintiff in the case, is a 43-year old woman with two children, ages 22 and 14. In 1973, she contracted meningitis and became paralyzed from the waist down. She has lived in the Philadelphia Nursing Home since 1989, due to insufficient funding for Pennsylvania's community attendant care program. She has been on the waiting list for community PAS since 1993. Idell S. sued the Department of Public Welfare (DPW) alleging violation of Title II of the ADA, specifically the requirement that services of state and local government be provided in the "most integrated setting" appropriate to the needs of qualified individuals with disabilities. People with disabilities should be served in an integrated setting only if the accommodations required to serve them would not fundamentally alter the nature of the program. Both parties in the lawsuit agreed that Idell S. could have lived in the community if PAS had been available, but the DPW alleged that Pennsylvania law and state regulations would not allow a transfer of funds from the nursing home to the community PAS account. The Court based its ruling upon the following factors: -- In passing the ADA, Congress found that, "individuals with disabilities continually encounter various forms of discrimination, including segregation . . ." (42 U.S.C. $12101(a)(5)). The ADA is based upon the premise that unnecessary segregation of individuals with disabilities in the provision of public services is itself a form of discrimination and, -- The transfer of funds from the nursing home to the community account did not fundamentally alter either the nursing home or the attendant care program. The Court required DPW to develop a mechanism to provide PAS services to this individual. Advocates assert that this decision will have far-reaching effects upon the deinstitutionalization movement in the United States. Independent living centers and other proponents of community integration should become informed about this ruling and should seek compliance with the "most integrated setting" mandate in their state long-term care and Medicaid programs. (See Appendix B for contact information.) The various pieces of legislation described above will continue to have a dramatic impact upon the transition services centers provide to consumers. These services will be explored in the following sections. Overview of Transition Services Provided by Centers During the summer of 1993, a mail survey was sent to the 404 centers in the ILRU database. Project staff were skeptical about sending yet one more survey for busy center directors to complete, but the response was quite positive. One respondent even wrote a cover letter, stating in part that, ". . . the roots of the independent living movement lie in work with institutionalized consumers. . . . The most useful thing anyone could do for the independent living movement now would be to pool our knowledge and generate a 'manual' of some kind on working with institutionalized consumers." Of the 108 centers responding to the survey, almost all representatives (96%) said that they provide services to help people leave nursing homes and live in the community. Respondents indicated that they provide services ranging from an informal array of traditional independent living services, such as information and referral, peer counseling, and housing referral, to more formalized arrangements where a center staff works regularly at an institution to help people move out. When asked how many consumers had moved out of institutions during the previous year, 41 centers (38%) said they had assisted from one to five individuals, almost half (48%) said they had helped from six to 20, and eight centers (7%) said they had assisted from 20 to 50 people. Three respondents claimed to have assisted over 50 people leave institutions for independence in the community. Centers use a variety of staff, including peer counselors (39%), service coordinators (31%), skills trainers (35%), advocates (34%), and volunteers (6%), to provide transition services. In over one-third of centers (38%), several staff are involved in the process. Most centers pay for these services with Title VII funds (53%). In addition, about 41% use state independent living funds and about 24% use other state funds. Almost one-quarter of the centers responding to the survey (23%) obtain funding from Medicaid and about one-fifth use private funding. Over one- third of centers (36%) have found other funding sources to pay for transitional services. Most centers (83%) said that they assist people of minority or multicultural backgrounds with transitional services. Several centers described outreach programs specifically targeted to reach these populations. Only seven percent of centers said they had formalized programs for families of individuals making a transition to the community. Survey respondents were also asked what they thought were the primary and secondary problems faced by people with disabilities seeking to make the transition. Not surprisingly, accessible housing and lack of PAS emerged as overwhelming barriers, followed by lack of personal income, inadequate transportation, and consumer confidence. The predominant problems identified by respondents are shown in Table I. Table I Major Barriers to Community Entry Facing Consumers As Reported by ILCs Problem Centers Reporting (n=108)* Number Percent (%) Housing 72 67% Personal assistance 56 52% Personal income/financial resources 25 23% Transportation 22 20% Consumer confidence 20 19% Community and agency attitude 13 12% General support services 13 12% Training (skills) 11 10% Lack of information 9 8% Family support 7 6% Medical care 7 6% Other (employment opportunities, emotional healing/follow along support) 2 2% *Centers reported more than one barrier, so percentages add up to more than 100. In sum, centers have not abandoned their original mission to move people from institutions into the community. Instead, some centers have constructed sophisticated policy solutions and have advocated on behalf of institutionalized individuals at the state level. Other centers have used innovative methods to stretch a few staff and a shoestring budget to get the job done, often in spite of insurmountable odds. Highlights of Center Programs The Center for Independent Living of Southwestern Pennsylvania participates in three distinct transition programs and has assisted 62 people to move from nursing homes to independence in the community since 1986. A brand new rural center in Illinois has successfully moved one person from a nursing home into the community. The Center in Detroit uses a transition program that is quite structured, consisting of independent living apartments scattered throughout an apartment complex. Candidates for the program are usually people who live in a nursing home or with parents and have never had a chance to learn independent living skills because of an overprotective environment. There is a maximum six-month stay in the transitional apartment. The center also can help with the first month's rent and security deposit. The Denver Center has established support groups for young people who have tried living independently, but have been severely abused by attendants or caretakers and have retreated back to the nursing home. Support groups also serve people in nursing homes who have never lived independently. One center helped a man who had spent 26 years in a nursing home move into his own apartment. He had been put in a nursing home when he was 33 by his father. He is a wheelchair user and has no other disability. When he first came into contact with the center, he didn't want anything to do with independent living, and only one and one-half years later would he speak to a center staff member. He asked if someone at the center could teach him how to use a computer without nagging him about independent living. Staff said yes, but insisted that he come to the center for training. That was the first time he had been on an access van by himself in his life! That day, he changed his mind and started working on moving out of the home. The biggest problem with the move was that the consumer did not have his own wheelchair and could not take the one from the nursing home with him. Staff scrounged up a used wheelchair, threw it in the back of a station wagon, and drove it to his new home. This man has been out on his own for several months, has interviewed for a job, and has become involved in his community. Policy Barriers Center staff surveyed by ILRU in 1993 overwhelmingly identified two major barriers to community living for institutionalized individuals: lack of affordable, accessible housing and inadequate PAS. These areas will be examined in the following pages and recommendations to policy makers will be provided. Housing Accessible, affordable housing is a significant factor in the life satisfaction of persons with disabilities. One of the first requirements of moving people with disabilities from institutional to independent living settings is to have an affordable, accessible place to live in the community. According to 67% of centers surveyed, finding such housing is the primary problem faced by consumers who wish to leave nursing homes. A plethora of federal and state programs have been established to provide housing and related services to individuals with physical and mental disabilities. However, according to the U.S. Department of Housing and Urban Development report to Congress, Worst Case Needs for Housing Assistance in the United States in 1990 and 1991, individuals with disabilities suffer acute housing problems and "face the most pressing unmet housing needs" of any group which qualifies for housing subsidies. According to the report, "worst case renters"--individuals who are very low-income renters with "priority housing problems," including those who are involuntarily displaced--pay more than half of their income for rent or live in severely substandard housing. About 47% of individuals with disabilities who receive subsidies from the Department of Housing and Urban Development (HUD) fall into the "worst case" category, a much higher percentage than other low-income housing recipients, even though people with disabilities generally have preference for admission into federal rental assistance programs. The report contrasts housing problems for individuals with disabilities and other "worst case renters." Most families with worst case needs live in urban areas and report severe rent burden as their only housing problem. In contrast, individuals with disabilities face both inadequate housing options and high rent burdens, leading to increasingly unmet housing needs. The report concludes by observing that since the enactment of the Housing and Community Development Act of 1992, the supply of federally assisted housing has declined as an absolute percentage of the overall housing supply, and housing options for people with disabilities are deteriorating (Division of Policy Development, 1994). People with disabilities, especially those in rural areas, face the following complex of housing problems. -- Most housing is inaccessible and too few accessible or adaptable housing units are available to meet the needs of people with physical disabilities. This problem is exacerbated by recent federal and state efforts to "cap" the number of people with disabilities under age 55 in subsidized housing complexes. -- Waiting lists to obtain subsidies are often long, resulting in unnecessary institutional placement until a subsidized apartment becomes available. -- Little multi-family housing exists in rural communities, so nondiscrimination provisions in the Fair Housing Amendments Act of 1988 (24 CFR Part 14--applicable only to multi-family housing) have had minimal impact on the availability of accessible or adaptable housing in rural settings. -- Since federal building access requirements do not exist for single family residences, this often translates into less effective "make-do" solutions to accessibility problems, especially in areas where resources for technical assistance on access do not exist (Donovan & Jones, 1995). -- The rent for accessible or adaptable apartments in urban areas often is not affordable for people with disabilities of moderate income, who are also ineligible for housing subsidies. People with more significant disabilities face complex needs beyond initial location of affordable, accessible housing. As recently as six years ago, group homes were widely considered to be the best means for providing supports needed by people with DD, MR, or CMI. While group homes allow more community integration than institutions, residents of some group homes still have little control over their lives and often remain isolated from the larger community (Rothman & Rothman, 1984). The group home system is based upon a continuum of services with people grouped by severity of disability and extent of service needs. As people progress or their service needs change, they are supposed to be able to work their way into a less restrictive setting. There are several problems with this approach, however. First, individuals have little control over the services they receive or even where they live. Second, people with significant disabilities, such as "problem behaviors," never move to less restrictive settings, but remain in highly controlled environments. Third, services are linked to housing facilities, not individuals, so residents must continually change places of residence to obtain the levels and types of services they need (Walker, 1994). In response to these concerns, the efficacy of group home programs is being examined by advocates and service providers. Some states are developing a new housing/support services approach that helps people establish homes in the community and provides the individualized assistance and support needed to live in those homes. This approach separates the housing from the support services, providing the individual with maximum flexibility and control. Disability agencies do not operate housing themselves, but help their consumers rent or purchase homes with the same resources used by other community members. Agencies coordinate these resources and provide the services and supports people need to live in their own homes. Support services usually are funded under state Medicaid waiver programs, but waiver funds generally are not sufficient to cover the costs of all services, especially for people with the most severe disabilities. Agencies that sponsor independent living programs must be innovative in tapping a variety of housing programs within the broader community, combining them with Medicaid waivers and other funds (Walker, 1994). Current public housing policy also is being examined, based upon criticism that it contains duplicative programs and funding streams, archaic, burdensome, and inefficient regulations, and disincentives for recipients to find employment. Based on these charges, HUD policies and programs are under review by the Clinton Administration and the Congress. Proposals during the 104th Congress call for sweeping changes including block granting and greater state and local control of funding. If these proposals prevail, 60 major HUD operational programs, including Section 8 certificates for persons with disabilities, the housing for the elderly and persons with disabilities program, and supportive housing and shelter care plus, will be consolidated into seven programs. These programs will be consolidated further into three performance-based block grants after 1998. Proposals also call for widespread use of vouchers to allow public housing residents to choose where they will live. Tenant-based rental assistance would be governed by a pricing system that pegs the dollar amount of the voucher to local housing costs. HUD has proposed national standards under the new performance-based funding scheme that would make provisions for individuals with disabilities a contingency for funding. Housing advocates, such as the National Action Coalition for Disability Rights and Housing, have pointed out several concerns and have proposed plans for reform. First, consolidating disability-related program funds into a general fund, combined with proposed reductions in program expenditures, is likely to result in loss of housing for people with disabilities. Second, although program reform provides an opportunity to accelerate the separation between housing and disability services, decreasing funds may also lessen the amount of services available. Third, current proposals allow local housing authorities to "target" funds to provide segregated housing programs for certain constituencies such as people with Acquired Immune Deficiency Syndrome (AIDS) or mental retardation, to save housing funds. This segregation allows local authorities to place ceilings on the amount of funds available for certain constituencies and can limit access to integrated, generic housing units. Policy Recommendations -- Ensure that a percentage of HUD resources is made available specifically to meet the housing needs of individuals with disabilities. People with disabilities should not be lumped in with a larger class of "vulnerable populations." -- Retain the current federal requirement that individuals who are homeless must be the top priority for housing assistance. The definition of "homeless" should include people in institutions such as state psychiatric hospitals, nursing homes, ICF-MRs, transitional programs, or residential treatment facilities. A person should also be considered a top priority for housing assistance if he or she cannot return to the original dwelling due to its lack of physical access. -- Direct increased housing funds to residents with disabilities through portable vouchers to ensure consumer control and independent living. Project-based assistance funds should be converted into vouchers. -- Prohibit set-asides for subgroups of people with disabilities and targeting of funds based upon age, type of disability, or service needs. -- Separate the services a person needs and freely chooses to receive from the housing made available so that services will follow the person wherever he or she chooses to live. Services should be community-based rather than facility- or site-based. -- Provide funding and tax incentives to housing providers, renters, and homeowners for structural modifications for physical access. Personal Assistance Personal Assistance Services (PAS), an essential component to independent living, is broadly defined as assistance from another person with activities of daily living to compensate for a functional limitation. Advocates for disability rights and independent living are the strongest proponents of PAS, emphasizing its role in allowing independence and employment (Nosek, 1990). Despite the cost and human factors championing community over institutional living, the United States has no comprehensive and coherent national policy to provide affordable, self- directed, community-based personal assistance for individuals with disabilities (Litvak, 1992). One result of this lack of federal policy direction is that 52% of centers surveyed report lack of personal assistance as a major barrier to transition for consumers from institutions to independence. Federally legislated and financed in-home services are fragmented, highly regulated, and often difficult to access. The financing of in-home assistance is scattered across several federal programs, including: -- home health, homemaker, and chore services financed under Titles XIX (Medicaid) and XX (Social Services Block Grants) of the Social Security Act; -- services provided under Title XVIII (Medicare) of the Social Security Act, when home-based assistance is associated with a recent hospital stay; -- services provided under Title III of the Older Americans Act; and -- the Veterans Administration's Home Care program and its Aides and Attendant Allowance program, which apply only to eligible disabled veterans (DeJong, Brannen, & Batavia, 1993). A major problem with establishment of in-home services is the institutional bias in the Medicare and Medicaid programs. Medicare, which provides medical coverage to Social Security recipients over age 65 and people with disabilities on Social Security Disability Insurance (SSDI), is extremely problematic for advocates of community integration. Medicare covers few services, such as PAS, which fall at the chronic end of the care continuum. This system covers primarily acute episodes in a hospital setting, or a hospital substitute such as a skilled nursing facility, where there is a curative goal. Medicare pays for in-home skilled services, with only limited payment for nonskilled assistance, and only if skilled services are being provided simultaneously. Coverage for services provided outside a hospital setting is short-term in nature, generally for restorative or episodic care (DeJong, Batavia, & McKnew, 1992). Medicaid also contains a strong institutional bias. Federal law mandates that states wishing to participate in the Medicaid program cover the following services: -- inpatient hospital services; -- outpatient hospital services; -- lab and x-ray services; -- services in a skilled nursing facility; -- early and periodic screening, diagnosis, treatment; and -- family planning, physician, and home health services. All other services, including PAS, are optional under the Medicaid program, and the states provide them at their own discretion. If states choose to provide services under this "Medicaid Optional" program, the 50% state match required often necessitates additional legislative appropriations. This leads to an extraordinary bias in favor of institutional care over community services in the Medicaid program. One need only look at the distribution of Medicaid funds--$2.4 billion for community-based PAS versus $20 billion for nursing homes--to appreciate the strength of this institutional bias (Nosek and Howland, 1993). The Medicaid HCBS waiver program has emerged as the single most important resource to states in offering flexible, consumer-directed PAS and other services to individuals with disabilities. However, the fiscal problems of the states, combined with current federal proposals to curtail Medicaid expenditures and the current institutional bias in the Medicaid program, pose significant barriers to expansion of HCB waiver services. Although all 50 states now offer some level of waiver services, the bulk of funding still supports institutional-based programs such as ICF/MRs and nursing homes. This problem is further exacerbated by the original federal formula for determining the number of individuals that can be served under a state waiver program. This formula was based upon the number of empty institutional beds or "slots" within each state. HCFA has relaxed this formula to some extent, but most states still are requesting waiver funds based upon this rule. This means that people with disabilities living in states that have an excess number of institutional beds have more access to PAS and in-home services than people in states with fewer empty beds. Institutionalization is quickly becoming an outdated and outmoded form of treatment for young and elderly people with disabilities alike and should not be the basis for determining a state's level of funding for community services (Smith & Gettings, 1992). While the Medicaid program, through its waiver provisions, has been liberalized over the past several years to allow more flexibility to states, the over-arching paradigm under which federally sponsored in-home services operate is the medical model. In this agency-directed or medical PAS model, service providers are hired, trained, and supervised by agencies (usually certified home care providers) under contract to the state Medicaid or Developmental Disabilities agency. Home health agencies were established to meet episodic health care needs during post- hospital convalescence, but have expanded to cover chronic needs of older and some younger disabled persons. Based on a medical or rehabilitative model, this approach views service recipients as patients whose care requires nurse supervision under physician treatment plans. System accountability flows to physicians, with payment to home health agencies which, in turn pay nurses and nurse's aides under their supervision (DeJong, et. al., 1992). Programs financed by the federal government are expensive and rely on professionals employed by home care organizations such as home health agencies or nursing homes (Litvak, Zukas, & Heumann, 1987). The medical supervision and professional control required renders these programs largely unresponsive to working-age adults with disabilities who must alter their expectations and schedules to match those of the home health agency. Consequently, people with disabilities without financial resources to purchase such care or without family members to provide the support needed are left with no community options. Independent Living Model The type of independent living program advocated by the disability rights movement is based upon a nonmedical empowerment model and differs from medical model programs in several significant ways. First, the independent living model puts the consumer, rather than a medical professional, in charge of his or her own care. The involvement of a medical practitioner is minimized, and the daily personal assistance generally is provided by a "lay" person. This person is not affiliated with a certified home health agency, but is an independent provider, often someone already known to the consumer. Second, the consumer, rather than a home health or professional agency, generally hires, fires, and often pays the assistant. The consumer sets hours and terms of employment. Third, the consumer, rather than a professional agency, trains the assistant to provide the help he or she needs. Several states, such as Massachusetts, Kansas, and Pennsylvania, have adopted consumer-directed PAS programs, either committing state resources or using Medicaid waiver provisions. However, adoption of such programs is dependent upon the strength of the disability advocacy community seeking to advance the cause of independent living in each state (DeJong, et al., 1992). The consumer control model recently has been adapted to serve people with limited cognitive ability by allowing a surrogate, such as a friend or family member, to perform management functions, like hiring, training, and ongoing supervision of the assistant. An essential element of this model is the ability of the consumer to choose a surrogate. Consumer and surrogate together decide which tasks each will perform. Surrogate models exist in only a few states; most HCBS waiver programs use a case management rather than a consumer/surrogate-directed model to provide PAS (Smith & Gettings, 1992). A plethora of other issues must be confronted in the establishment and implementation of PAS programs. Many of these issues, described below, have proved to be problematic in many states. State nurse practice legislation prohibits unlicenced persons from performing medical functions including tracheal suctioning, bowel and bladder care, and other personal hygiene tasks. Persons with the most significant disabilities can be served safely and more cost- effectively at home without the involvement of nurses in the provision of routine daily care (Bach, et al., 1992) . Yet many states are reluctant to establish PAS programs that are relatively free from the involvement of medical personnel. Tax and benefits liability issues are also problematic. Current PAS programs either require the consumer to act as the employer of an individual provider or to accept services provided by an agency. Few options currently exist which match consumer desires and capabilities with the appropriate level of responsibility over their own care. Consumers should have the option to use the state or another agency as a fiscal intermediary which takes responsibility for withholding taxes and paying Social Security benefits (Sabatino, 1995). Consumers must be educated to advocate more effectively for a range of choices. Lack of benefits is another major issue with consumer-controlled PAS. Most states that establish these programs provide no funds for employee benefits such as sick or vacation pay, establish no mechanism for employee raises, and make no provisions for liability insurance. Lack of competitive benefits packages has a dramatic effect on the recruiting, reliability, and longevity of the attendant labor pool. Funding constraints at all levels of government, manifest through access and service limitations, restrict the effectiveness of PAS. Access often is limited to consumers with low incomes, and benefits are denied to consumers with working spouses, family members, or who become employed themselves. Some programs are limited to individuals who would require institutionalization without the provision of PAS. Other programs limit hours or expenditures per person, require that PAS services be provided in the home rather than on the job or in the community, or restrict the type of services an attendant can provide (Kennedy, 1993). Another serious limitation is that most PAS programs are limited to those with physical, rather than cognitive or mental disabilities, or require that the consumer manage the personal assistant directly. This excludes people who lack the desire or capability to manage the service themselves. A few states are experimenting with surrogate programs that substitute control of a friend or family member for the consumer. However, these programs tend to exclude consumers with little family involvement or support--those most in danger of institutionalization. Consumer education can assist PAS users and their surrogates in confronting this range of complex issues. Providing information about how these issues have been addressed in other states can allow consumers to serve as catalysts for change in their own localities. Policy Recommendations -- Federal funding should be provided for consumer-directed personal assistance programs for working and living independently, either by: 1. adopting federal legislation that diverts funds from institutions to community-based PAS (see recommendations offered by American Disabled for Attendant Programs Today, 1995), or 2. mandating that states provide in-home personal assistance and other community services in order to receive Medicaid funds and requiring that PAS be addressed in a state's Medicaid plan. -- States should modify their nurse practices legislation to allow non-medical personnel to provide quasi-medical PAS services, such as tracheotomy suctioning. -- States should insure that their consumer-directed PAS programs are flexible enough to offer consumers a range of options for control commensurate with their desires and capabilities. For example, states should provide the option for consumers to use a fiscal intermediary for tax withholding or should allow consumers to select a surrogate to manage their care. -- States should provide funding to offer comprehensive, competitive benefits packages to personal assistants that would include sick pay, vacation pay, and worker's compensation coverage. Service Approaches Several variables strongly influence the extent, type, and level of transitional services offered by centers. Primary variables include state leadership in establishing formal mechanisms to decrease institutionalization, presence of a consumer-directed PAS program, characteristics of the service area and population (urban, rural, racial, and ethnic mix of residents), and the primary disability groups served by the center. Each of these variables is discussed below. Formal Mechanisms All states now offer some type of HCBS waiver to provide community services. However, states vary widely on services provided, populations served, geographic areas of coverage, and available financial resources. States have taken a variety of implementation approaches, but all must prove that individuals served under HCBS waiver programs are residing in an institution or are in imminent danger of entering an institution. If centers become involved with implementation of state waiver programs, the services that they provide would be highly formalized and regulated. A state agency, such as Medicaid or DVR, would provide close, ongoing oversight and contract supervision and would require extensive documentation of consumer services and program finances. Sophisticated record keeping systems and close contact with the sponsoring agency would be required. Centers participating in waiver programs are likely to obtain ready referrals from the sponsoring agency or even from institutions. Waiver funds can be used to cover skills training services for waiver-eligible individuals, allowing centers to use Title VII funds for non-waiver consumers and for other independent living services or advocacy. However, in addition to rigorous paperwork requirements, centers must also be prepared to meet Medicaid requirements that run counter to independent living philosophy, such as involvement of a nurse or case manager. Although some centers are able to successfully negotiate their dual roles of service provider and advocate, other centers experience conflicts between their role as service gatekeepers (determining who receives PAS and how much) and their role as agents of systems change. Consumers may become confused as to who will advocate on their behalf if an advocacy issue arises concerning their PAS. Consumer-Directed PAS Programs Not all states that provide community-based personal assistance do so through a medicaid waiver. Several states, including Colorado, Virginia, Kansas, Pennsylvania, and Massachusetts, offer consumer-directed services with a state appropriation. Because independent living centers and consumers with disabilities in these states advocated for PAS through their state legislatures, people with disabilities were instrumental in determining the conditions of service. For example, the PAS program in Virginia requires no involvement of a medical professional in determining hours of PAS or duties of an assistant. Medicaid waiver requirements do not govern service provision, so centers are more free to negotiate involvement with the program. The major disadvantage to this approach, of course, is that state appropriations can be level- funded or easily cut in times of budget shortfall, resulting in long waiting lists, low wages, or restrictions on the number of service hours. If the center's involvement is not mandated, the relationship between the center and the nursing home may be less formal and perhaps less cooperative. Characteristics of the Service Area and Population Rural independent living centers face constant and often overwhelming challenges that necessitate particular resourcefulness in identifying existing or potential resources to serve consumers. Major challenges include scarcity of services, lack of accessible housing and transportation, higher per-consumer cost of service, broader staff responsibilities, and increased requirements for staff travel. Rural centers have become expert at developing mutual supports with other agencies, in combining resources, keeping abreast of information resources, and implementing new ideas and service models (Donovan & Jones, 1995). These factors tend to make service provision less formalized and to allow for more flexible service approaches. The service requirements of formalized waiver programs can become challenging to implement in rural areas. Even more than in urban areas, relationships between service providers form the bedrock of service delivery systems. The importance of maintaining these relationships in obtaining referrals cannot be overstated. Positive relationships with community leaders, combined with other innovative approaches, are essential in locating personal assistants and others who provide individualized services. Cultural diversity within the service area is also a major determinant of service models. The principles of consumer choice and empowerment, cross-disability services, and the importance of peer role models should be the cornerstones of any multi-cultural programs. To implement this philosophy adequately, individuals from cultures being served should be involved at all levels of the organization, including the board of directors and center management. Disability Population Centers wishing to provide transitional services to a cross-disability population must be particularly innovative in developing new service models. For example, traditional consumer- directed personal assistance programs must be modified to serve people with cognitive impairments. Surrogates or advocates can fill this role, but care must be taken to insure that the consumer makes life choices at the highest level possible. Centers with Innovative Approaches The programs described in the following pages show how centers have grappled with the above issues, implementing creative and unique service approaches tailored to their particular communities. Representing only snapshots of transitional services, these exemplary programs provide glimpses of service implementation possibilities given the array of variables. ENDependence Center of Hampton Roads, Norfolk, Virginia Liberty Resources, Inc., Philadelphia, Pennsylvania Wyoming Independent Living Rehabilitation, Inc., Casper, Wyoming Topeka Independent Living Resource Center, Topeka, Kansas Independent Living Center of Amsterdam, Amsterdam, New York Independent Living Resource Center, San Francisco, California EXEMPLARY PROGRAMS ENDependence Center of Hampton Roads Norfolk, Virginia Introduction The ENDependence Center of Hampton Roads began providing services in 1980 to the cities of Norfolk, Portsmouth, Chesapeake, Virginia Beach, Suffolk, and the County of Isle of Wight. Located in Norfolk, the center serves a population of almost one million, with a reported budget of about $900,000 and a staff of 25 in 1995. In addition to traditional independent living services of peer and group counseling, skills training, information and referral, and individual and systems advocacy, this center operates a number of innovative programs including a literacy project, a limited Section Eight housing voucher program, transition from school to community living services, and, for the past three years, delivery of PAS. The center serves about 600 participants annually. Project Initiation The center's work with residents of nursing homes really began about 27 years ago in upstate New York, when Jerry O'Bryan became a quadriplegic. His story exemplifies what can happen when an individual converts the energy and drive necessary to get himself out of a nursing home into commitment to help others achieve a similar goal. Because few services existed in upstate New York to help people with significant disabilities to live independently, Jerry moved to a nursing home. Staff were unsure how to meet the needs of a 23-year old recently injured male; Valium seemed the most appropriate answer--about 100 milligrams per day! (The average dosage is between five and ten milligrams daily.) Jerry is missing about two years of life from his memory. Finally, a new doctor reduced the medication and Jerry began the road to recovery. The real turning point in Jerry's life came about ten years later when he met another quadriplegic who was visiting the nursing home. This individual lived independently in the community and although Jerry did not know exactly how this could be accomplished, living independently became his consuming goal for the next five years. Jerry's first major problem was convincing the nursing home staff and his mother--his legal guardian--that he was capable of living independently. His mother could not be convinced, and Jerry had to take her to court to obtain his legal guardianship. In addition, Jerry worked with other residents to improve conditions at the nursing home. He organized a residents' council and advocated for more activities, better food, and more opportunities to get out into the community. Finally, the day came for Jerry to move out. There was no independent living center in that part of New York, so Jerry was not certain what support he would need to live independently. He knew he needed an accessible apartment and at least one personal assistant. Equipped with only these supports, he began his independent life. "Around three o'clock that afternoon, I started getting a bit hungry. One of my friends happened to come by and explained that if I wanted to eat, I had to go to the grocery store to get food. I had lived in a nursing home for so long that I really had forgotten what life was like on the outside," explained Jerry. "That whole first year was just a series of mistakes and corrections," Jerry continued. "When the first utility was turned off for lack of payment, I figured I'd better open the mail and see what else I needed to pay. One night, I had to sit in my chair all night because my personal assistant did not show up. I developed an elaborate system of back-up assistants to prevent that from happening again." After eleven bouts of pneumonia, Jerry decided to move south to the warmer climate of Virginia Beach. A supportive nurse from the nursing home served as his personal assistant, and Jerry began to get his life together. Soon, he became bored with the lack of activity. He felt a strong commitment to making sure that other severely disabled persons would neither have to endure life in the nursing home nor have to face such difficulties moving out without adequate support. He wrote a letter to the governor of Virginia asking to be referred to an organization where he could assist people in leaving nursing homes. He was referred to the ENDependence Center and immediately began to volunteer. His first volunteer assignment for the center was to work with residents of a long-term care facility for people with disabilities. At first, the nursing staff were reserved and even a bit hostile, many of them wondering why he was not a resident himself. He talked to the social workers informally over lunch or on coffee breaks and gradually their reserve dissipated. Jerry began to work with residents to get equipment they needed to live more independently at the nursing home. Staff began to ask Jerry to work with residents who had "attitude problems." Finally, the nursing home requested an in-service training from the center on independent living services and began to refer residents for attendant management training, budgeting, and other center services. Jerry was hired as a full-time peer counselor by the ENDependence Center in 1985 and continued to serve nursing home residents in addition to participants from the community. When asked how services to residents in nursing homes fit within the mission of the center, Jerry responded forcefully. "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." Services Paul Melvin, the center's director of participant services, explained that once the center gains entree into the nursing home, referrals come quite easily. Most referrals come from the nursing home social worker or from other residents. If the peer counselor makes him or herself available, residents will just come up and talk informally, then later decide to seek services. The peer counselor may notice someone hanging around and strike up a conversation. Most residents are quite willing to talk to someone who seems interested. Once the center gets the referral, the intake specialist meets with the person to explain services. A peer counselor is assigned to help develop a service plan with goals, objectives, and outcomes based upon the individual's desires. Generally the peer counselor provides services, but the resident may also receive group skills training with other participants. The peer counselor is able to work with the participant on most advocacy issues, but if the issue becomes extremely complex, the center's advocate will go to the nursing home to work with the participant to solve the problem. Nursing home residents receive the same types of services as participants in the community. For some, moving out of the nursing home and living in the community is the ultimate goal, but others' goals include getting out into the community while retaining their nursing home residency, learning about disability law and their rights under OBRA, or acquiring equipment to make them more independent. Some residents want to move to a different home where the care is better or where they are closer to family and friends. Residents are encouraged to come into the center for services, especially younger residents with the goal of leaving the home. Peer counselors teach them to use the regular route or paratransit service provided by the local transit authority. The nursing home residents benefit from contact with other participants who are at different stages of the independent living process--getting support and encouragement from those who are further along and providing encouragement for those who are just beginning. In some cases, men's and women's group counseling sessions are held for older residents at the nursing home to assist them with personal issues such as grief, sexuality, and loss of privacy. In fiscal year 1993, ENDependence Center staff served 128 residents of sixteen nursing homes throughout the Hampton Roads area from ages 18 to 81. The majority of these residents were in nine homes, with two or fewer in the other seven. Jerry traveled on what staff referred to as "the nursing home circuit" during his seven years of employment at the center. Upon his retirement, each of the peer counselors was assigned one or more nursing homes in addition to their regular responsibilities. Contracts The center has found two methods for initiating a relationship with a nursing home. One way is to contact the nursing home social worker and ask to make an appointment to talk about center services. Another way is to get a referral from some other source, such as a family member, and to begin providing services to that individual. In the latter case, staff make an appointment with the social worker to explain center services only after contact with the consumer is established. The social worker is probably the most beneficial contact for a center that wants to serve residents in a nursing home. Social workers can get in the way of a resident moving out, but most are not as driven by financial considerations, as are nursing home administrators, and usually are easier to convince. ENDependence Center staff are members of the Virginia Association of Social Workers and have used this opportunity to strengthen relationships with social workers as fellow professionals. Jerry stated that doctors often are a bigger obstacle to a resident in making the move. Jerry informs the patient that if the doctor resists, the patient has the right to seek another medical opinion, and he helps the doctor to understand that moving out is ultimately the patient's own choice. Family members can be important supports or major obstacles for the resident who wants to move. Often, contact with a person like Jerry, who has lived in a nursing home but currently lives independently, is a great help in convincing the family of the viability of community living. Resources Four of the center's peer counselors spend one day per week in a nursing home, and others have other nursing home participants on their regular caseload. Paul estimates that the time spent serving nursing home residents constitutes at least one full-time position. Services are funded with a combination of Title VII (Part C), state, and local funds. The center is under contract with each of the cities in its service area to provide independent living services and advocacy to city residents. Nursing home residents are also city residents, so some city contract funds are used to cover costs associated with serving them. Two of the peer counselors are funded under private grants, one from the Beasley Foundation and one from the Portsmouth General Hospital. Both of these grants fund peer counselors who provide core independent living services to area participants. Services to nursing home residents are included in these contracts. The center has formal contracts with two nursing homes. The contract with one provides an office with a telephone for the peer counselor in the facility. In return, the center provides annual in-service training for staff and offers peer and group counseling, skills training, advocacy, and other services to residents at no charge. (See Appendix C for a copy of this agreement.) At the time of writing, the center had negotiated a fee-for-service arrangement with a new for-profit nursing home for technical assistance and peer counseling, but no one has requested services yet. Multicultural Issues Paul Melvin feels that a person who is from an ethnic or racial minority group has a greater risk of becoming institutionalized because the family is less likely to have resources necessary to make their home accessible, to hire a personal assistant, or to get other services necessary to keep the individual at home. Another problem is discrimination by service delivery and medical professionals who force minorities into a higher level of care than is really required. Paul states, "You often see paraplegic or quadriplegic minorities living in nursing homes, when their white counterparts have obtained the services to live in the community." One African-American man who lived in a local nursing home has since been hired by the center to work with people with disabilities who live in low income housing projects in the inner city. Another problem is that people of color are often placed in nursing homes without consideration of or sensitivity to their specific needs. Paul points to a Vietnamese man who was placed in a nursing home in Virginia Beach, far from his friends and family, simply because a bed was available. Jerry has worked with many people of color over the years and feels that the experience of disability usually transcends one's ethnic or cultural status. Barriers The most serious problem with providing this service, according to Paul, is acquiring funding for more peer counselors to serve the nursing home population. Peer counselors continue to serve over 100 participants each, and not everyone gets adequate time from the peer counselor to reach their goals quickly. The center does not have the resources to serve all nursing home residents within the service area who could benefit from services. Another major problem is burnout. For Jerry O'Bryan, his own experience living in a nursing home is extremely beneficial in working with other residents. However, continuous visits to nursing homes caused Jerry to have flashbacks to his own incarceration, especially to the times when he was over drugged. Another cause of burnout is the high mortality of residents. Death is something Jerry dealt with almost on a daily basis; he experienced serious burnout after seven years of full-time work. To address Jerry's burnout, nursing home residents were scattered among several peer counselors, but this created another management issue--supervising several counselors who frequently were out of the office. Staff training was also an issue because the other peer counselors did not know the institutional procedures as well as a former nursing home resident would. Jerry believes that staff who will work in the nursing home must become familiar with OBRA, the Resident Bill of Rights, discharge planning, care plan team meetings (usually held quarterly with all nursing home staff, the family, and the physician), and the resident council. The peer counselor should become part of the planning process and should attend and participate in team and resident council meetings to become familiar with issues of concern. Safe, affordable, accessible housing is the major obstacle current nursing home residents must confront if they are to live independently in the Hampton Roads area. Compounding this is the problem of putting together sufficient financial resources to move out--for buying furniture, making deposits, and turning on utilities. The center has used private charities and the Norfolk Housing Redevelopment Authority's consumer service fund for this purpose. High medication costs are also an issue for people who are on Medicare but not eligible for Medicaid once they leave the nursing home. People who are in school or are seeking employment can use the Supplemental Security Income Plan to Achieve Self Support (PASS) for these purposes. Jerry feels that resident apathy is also a problem: "We have to get people before they get too comfortable in the nursing home, while they still remember what life is like on the outside." The center also sees the need for transitional housing to provide a stepping stone between the nursing home and complete independence. The center will not offer this service itself, but has established a separate corporation, controlled by people with disabilities, for this purpose. Evaluation Paul Melvin feels that if even one person is able to move from a nursing home to independence, this is a true accomplishment. Statistics for nursing home residents are not kept separate from other participants, but center staff estimate that eight people made this move during fiscal year 1993. The center also reports that during this time period, residents wrote 55 independent living objectives and completed forty-nine. Replication Centers wishing to replicate this service should begin by contacting the nursing home social worker to explain center services and to seek referrals. In coordination with the social worker, the peer counselor can identify individuals who could benefit from services. A good counselor will quickly establish a rapport with residents to get them talking. It is helpful, but not essential, for the peer counselor to have lived in the nursing home. However, personal experience of disability can be shared between the resident and the counselor, irrespective of the counselor's past living situation. Another option would be to have a former nursing home resident who lives independently available as a resource for working with those who need additional encouragement. Liberty Resources, Incorporated Philadelphia, Pennsylvania Introduction Liberty Resources, Inc. (formerly Resources for Living Independently) began providing services and advocacy to the Philadelphia five-county metropolitan area in 1980. In addition to core independent living services, the center administers the Pennsylvania Attendant Care Program and contracts with the Department of Public Welfare (DPW) to operate the Community Services Program for People with Physical Disabilities (CSPPPD). CSPPPD serves 15 counties in northeast Pennsylvania, in addition to the entire Philadelphia area. Roughly, this includes about half of the state's geographic area and about two-thirds of the nursing home population. The combined fiscal year 1994 budget for Liberty Resources was approximately $5 million: about $1.1 million from the CSPPPD program, $2.8 million from the attendant care program, $365,000 from federal and state independent living funds, and the remainder from miscellaneous sources. The purpose of the CSPPPD is to serve people in nursing homes with the ultimate goal of assisting them to live independently in the community. The center operates the CSPPPD from two offices, one in Philadelphia and one in Allentown. Additionally, the center contracts with the Northeast Pennsylvania Center for Independent Living in Scranton to operate the program. Project Initiation During 1988 and 1989, disability advocates used nursing home reforms contained in OBRA 1987 as a springboard for the CSPPPD program. (See Chapter 4, "Overview of Relevant Legislation" for a fuller description of OBRA '87). The federal legislation targets three distinct groups: "mentally retarded," "mentally ill," and "other related conditions." Some centers and their advocates saw implementation of this legislation as an opportunity to broaden their funding base and to assist people with physical disabilities to leave nursing homes and live independently. They advocated for a strong, consumer-directed program to serve people in the "other related groups" category. People at other centers were concerned that this program would force nursing home residents to move into the community without assurance of adequate services and supports or to leave the nursing homes against their wishes. To address these concerns, the centers advocated with DPW to make choice of residence a cornerstone of the program and to insure that only those who wished to leave the nursing home and live independently in the community would be afforded this opportunity. This allayed the other centers' fears and brought their support. The CSPPPD initially was funded in September 1989. During the first year of funding, three contracts were awarded: Liberty Resources was awarded a double contract for its own service area--the southeast region of the state. Liberty was also given the contract for the northeast region, because no bidders from that region came forward. The CIL of Southwestern Pennsylvania was awarded the contract for the state's western region, and United Cerebral Palsy (UCP) of Lancaster was awarded the contract for the central region. These three contractors were again awarded contracts for the 1992-1995 funding cycle. Under DPW's initial program, nursing homes were responsible for identifying the individuals to receive services under CSPPPD. A conflict of interest became obvious almost immediately because nursing homes were being asked to identify residents who could be moved to the community, thus decreasing the nursing home's revenues. The large, urban nursing homes did an adequate job of identifying potential program candidates, but small homes, those operated by counties and those in rural areas, identified almost no one in the OBRA target groups. Harry Richardson, a nursing home resident of 47 years with cerebral palsy, was among the 25 to 30 consumers in the Philadelphia Nursing Home that were not identified. He sued DPW, asserting that not all of those eligible for the program were being identified and served. As a result, DPW established a process to visit all nursing homes annually to identify potential participants, and the program has grown tremendously. Liberty Resources served over 600 individuals in 1994, up from the 250 consumers served in the first year of the program. Liberty Resources still directly serves the majority of the state, but contracts with other centers to provide certain services such as peer mentoring. UCP of Lancaster subcontracts with UCP affiliates in its region, and the CIL of Southwestern Pennsylvania contracts with CILs in the western region. One advantage of having only three service providers in the state is that consumers who move from one place to another do not need to change providers; however, overlaps in geographic areas still cause conflicts for providers. Services People with physical disabilities who are currently residing in nursing homes must be offered CSPPPD services. Individuals can be served if they: -- wish to leave the nursing home in order to live in the community, -- wish to relocate to another nursing home, -- wish to evaluate whether to move to the community or another home, or -- wish to stay in the nursing home, but want additional skills training, counseling, or some other service offered by the center. The nursing home resident begins the process by identifying a community support team, including him or herself, a CSPPPD service coordinator, and another support person--perhaps someone from the nursing home or a family member. The consumer directs the team, beginning with setting goals and establishing action steps for each goal. Responsibilities are assigned to different team members, including the consumer. For example, the consumer may be responsible for obtaining placement on waiting lists, the service coordinator may make a referral to the Office of Vocational Rehabilitation (OVR) to open a case for the consumer, and the nursing home social worker may make a referral for an occupational evaluation. As the process moves along, the consumer assumes more and more responsibility for the move so that by the time the relocation takes place, the consumer already has experience making decisions and directing his or her own life. In addition to service coordination, the individual receives peer counseling, independent living skills training, and advocacy. CSPPPD funds can also be used to purchase transportation, personal assistance services (PAS), or adaptive equipment. Many also receive empowerment training to become informed about the Americans with Disabilities Act and other civil rights laws. These services can be provided in the nursing home or at the center. Liberty does not provide PAS services itself, but offers two distinct models to consumers: an agency model and a consumer-directed model. Under the agency model, the consumer can use CSPPPD funds to purchase PAS through home health care agencies. Under the consumer model, the consumer is the employer. He or she hires the assistant, maintains records of hours worked, and submits documentation to the agency. The agency handles payroll and withholds taxes and Social Security. Each assistant paid through CSPPPD funds must participate in 24 hours of training provided by Liberty Resources. Training includes grounding in the philosophy of consumer direction, personal assistant duties, and record-keeping. Integral to the success of the CSPPPD is the community integration component where residents of nursing homes participate in community activities, such as dining, shopping, and other recreational and civic events. The center can pay for all related expenses, including cost of the activity, transportation, and PAS. Based upon consumers' advocacy for 24-hour PAS coverage, the center has recently initiated "clustered living," in which two or three participants live in the same apartment or near each other in order to pool PAS hours and receive around-the-clock coverage. Under this arrangement, each member in the cluster receives prescheduled PAS and can pool the cost of up to 18 hours of on-call PAS per day. In the typical situation, the three members of a cluster live within ten minutes of each other. They each receive about five hours of prescheduled PAS per day. A personal assistant is on-site in one consumer's home from 10 p.m. to 6 a.m. The other two consumers can call the assistant by beeper if they require assistance during the night. The cost of the eight-hour night-time coverage is split among the three consumers. If one consumer is not at home, e.g., is on vacation or in the hospital, the cost of the on-site coverage is split between the remaining two consumers. PAS can be provided by the home care agency or through the consumer option where the consumer is the employer. Harry Richardson left the nursing home after 47 years to live in a clustered arrangement, attaining independence for the first time in his life! Program participants, including Harry, who have made a successful transition to community living, serve as role models and mentors for others. They have formed an advocacy group called Consumer Connection, to provide direction to the CSPPPD and to insure that the program does not shift to a medical model. Two members of the group have joined Liberty's board of directors. Contacts The most important contact, according to Linda Staroscik, program manager for transition services, is the consumer. Motivated consumers are their own best advocates. Contacts in the housing field, such as housing managers and officials from the Section Eight and 202 programs, are critical. The center has hired a housing specialist to work with CSPPPD participants and other consumers to solidify these contacts and to assist with housing location. The center must also maintain good contacts with PAS provider agencies and with OVR for those seeking employment. Resources The State of Pennsylvania uses Medicaid waiver and state PAS funding to operate the CSPPPD. People who meet Medicaid eligibility requirements are funded through the waiver program; those who do not meet the requirements receive state CSPPPD funds. Each individual can spend up to $59,000 per year on community support services, but the average individual spends between $25,000 and $30,000. CSPPPD funds also pay for 24 program staff to serve the nursing home population. A contract between Liberty Resources and DPW defines the extent of services and administration which the center will provide. Multicultural Issues The populations served through the CSPPPD represents the population in each community. African Americans comprise the largest multicultural population, but a number of Hispanic people are served as well. The center has hired a service coordinator with a Hispanic background, but beyond this the services are similar for all groups. Family bonds are stronger among some minority groups, and program inflexibility can cause conflicts. For example, family members cannot be paid for serving as personal assistants. Two families have successfully dealt with this problem by "swapping," providing PAS for a member of the other family. Barriers A major problem with the CSPPPD program lies within the contract itself. Any nursing home resident identified by DPW as eligible for CSPPPD must be served by the center, whether or not services are desired. DPW requires documentation that a service plan was developed and that services were provided. "Some people have lived in nursing homes for years and do not want to move into the community. It's very frustrating to have to chase someone down the hall to get a service plan signed when they don't want services. It goes against our basic philosophy," explains Linda. A related problem is that some residents have grown complacent and are satisfied with their lives, with little expectation or desire to change. The center tries to develop programs that people will find attractive, but many nursing home residents do not participate. When the program was first initiated, some residents feared that talking to a center representative signified a commitment to move out. While center staff have tried hard to dispel this myth, many residents still do not want to take the risk. The problem with moving that most nursing home residents identify is fear that a personal assistant will not arrive at the appointed time, thus leaving them stranded. Often it seems that the same residents continue to participate in programs, while most do not. Because so few residents actually move, the center ends the year with a surplus of CSPPPD funds; about $900,000 remained unexpended in fiscal year 1994. On the other hand, some residents are willing to trade the security of the nursing home for the freedom of the community. Several have moved, even after 40 years in the nursing home, but the center is most successful in assisting people to leave soon after their arrival. Another problem is that the CSPPPD program serves only those who are in nursing homes. Funds are not available for people already in the community. This problem can be circumvented only by moving someone from the community into a nursing home for a short period of time, often causing extreme fear and disruption in the consumer's life. This approach also requires the consumer to wait for an opening in a nursing home to move in, simply to return to the community for services. A major problem with this approach is that a consumer may be forced to sell his or her home in order to enter a nursing home, leaving the person with no place to return. Liberty is advocating with DPW to apply for a Medicaid waiver that provides funding for services before an individual is forced into a nursing home. Also problematic is a lack of affordable, accessible housing which can cause long delays in leaving the nursing home. Staff also identify a gradual shift of the CSPPPD to a medical model as another problem. For example, a physician is required to sign a statement annually that the individual is able to live in the community. Additionally, CSPPPD participants must maintain contact with the center to remain eligible for services, even though PAS is their sole need. Evaluation According to a program evaluation of the Pennsylvania Medicaid Waiver Program prepared for the Pennsylvania Coalition of Citizens with Disabilities by the Human Services Research Institute, a sample of case records provides clear evidence of the cost effectiveness of this program. The following table shows a breakdown of costs for individuals who have moved from a nursing home or institution to live independently in the community. Person Annual Costs For Congregate (Nursing Home) Care Annual Costs For IL After One-time Expenses One Time Expenses Savings From IL After One Time Expenses* Charles $51,110 $24,226 $8,000 $26,874 Jane $51,000 $25,290 $930 $25,710 Mary $51,110 $10,950 $0 $40,150 Carol $62,050 $27,158 $5,690 $34,892 * Not including housing subsidy. -- Charles is 63 years old, and has been living in a nursing home for over 40 years at an approximate rate of $140 per day. One-time expenditures covered a new wheelchair and other adaptive equipment. -- Jane, a 36-year old resident of a rehabilitative nursing home, had tried unsuccessfully to live independently. She currently resides in transitional housing and receives independent living services from the center. After one-time equipment and training costs, her annual expenses will decrease by about $10,000. -- Mary is 36 years old and has spina bifida and depression. Her supported living services include a homemaker, supervision, and personal assistance, reducing her daily costs from $140 to $30. -- Carol is a 25-year old wheelchair user who attends community college. Plans are being made for a more independent living arrangement, so cost figures represent estimates. Ellison and Ashbaugh, 1990, p. 15-16 Replication Long-range planning and a strong, united advocacy effort are required to replicate the CSPPPD. One major lesson independent living advocates have learned is that they should agree upon strategies and outcomes before a new project is initiated. Also, centers willing and able to undertake administration of complex transition programs should be identified up front. Administrative and staff members must have a strong commitment to independent living philosophy and must vigilantly guard against the bureaucracy's tendency to move toward a medical model program. Wyoming Independent Living Rehabilitation, Incorporated Casper, Wyoming Introduction Wyoming Independent Living Rehabilitation (WILR) provides independent living services in the state that is ninth largest in the nation in land mass and smallest in population per square mile. The center serves the entire state's population of about 450,000; 60% of the service area is urban and 40 % is rural. Casper and Cheyenne are the two largest cities with populations just over 50,000 each; the remainder of the state is rural. The western part of the state is mountainous, the eastern part is dominated by the Black Hills, and the central portion is flat. Coal, agriculture, tourism, and oil are the primary industries. The center operates with a total of 18 staff--four funded under the Title VII, Chapter 2 Older Blind program--and the rest funded under Title VII, Parts B and C. The center established its main office with Part C independent living funds in Casper, but most services are delivered through satellite offices scattered throughout the state. Counselors work from these satellites or from their homes, each providing services in several large counties. Fortitude and creativity are essential components of services and advocacy in this extremely rural and diverse geographic terrain. Center staff must provide services within the framework of attitudes and experiences of the rural residents, many of whom have never left their small communities. Physical rehabilitation is available in only two cities; most people who acquire disabilities often are required to go out of state or at least away from the local community. Convincing a recently disabled person to obtain basic physical rehabilitation can be a major obstacle. Project Initiation Transitional services from nursing homes to independent living have been an integral part of WILR's services since the center's initiation. Bob Carbon, the center's founder and first executive director, is a quadriplegic who spent most of his life under the care of family and friends with no real expectations of independence. A visit to CIL in Berkeley convinced him that things could be different, and he set out on the road to independence and self-actualization. Once he attained independence, his life's mission became advocating for equal access and opportunities for independence for others. He and the center's staff and board believe strongly in personal dignity, right of choice, and self-determination for all individuals, regardless of age or disability. Keeping people out of nursing homes and helping people to leave institutions always has been, and always will be, a priority for the center. Services The center emphasizes keeping people out of nursing homes, believing that "prevention is superior to care." Most people, whether young or old, prefer to stay in their own homes, and this right of choice and personal dignity is the bedrock of center services. Consumers receive services in their own home because of the rural nature of the center and the basic lack of accessible transportation in the area. It is a belief of WILR staff that if people learn independence skills in the setting where these skills are required, chances of success are enhanced. The primary method of avoiding institutionalization is to get into the person's home as soon as possible after the injury or illness occurs to provide advocacy, peer counseling, independent living skills training, home modification, adaptive equipment, referral for personal assistance, and other services. If the individual is a candidate for admission into the nursing home, the center provides temporary services to delay nursing home placement. If the individual wishes to leave the nursing home--and most do--center staff begin working with other agencies to put the pieces together to prepare for discharge. If the person wishes to stay in the nursing home, the center works to attain the highest level of independence possible in that environment. Personal choice drives the services an individual receives from the center, and this fact contributes to an 80 % success rate in attaining consumer goals. To be eligible for services, an individual must have a severe disability that impedes independence as well as a reasonable expectation that services will help in attaining, increasing, or maintaining independence. Eligibility can usually be established by a center staff person at the first meeting, but if the disability is not apparent, a doctor's certification is required. The center serves people from birth to death, and maintains no financial eligibility requirements. Referrals to the center come from family, hospitals, nursing homes, community agencies, or the individual with a disability. The center makes contact with the individual within five days of the request for service. The intake procedure is consumer-oriented, with an application written in easily understandable language. The consumer's signature serves as an official request for services. Financial information is requested to enable staff to be more effective in informing the consumer about and to advocate for additional programs and services, but this information is not used for center program eligibility. Next, a skills trainer works with the applicant to do an assessment of activities of daily living, including toileting, bathing, transferring, dressing, and cooking, in order to determine what assistance or adaptations would be necessary for the individual to remain independent. More than one service generally is required, so the applicant prioritizes these needs to form the beginning of the independent living plan. Teaching and advocacy start during the first meeting, as do building rapport with the consumer and encouraging an expectation of success. This process does not differ significantly for individuals who are already in a nursing home or in the hospital waiting for nursing home placement. If the person is in the hospital, plans can be developed to avoid placement or to facilitate discharge from the nursing home as soon after placement as possible. Staff at WILR have become very good at turning ordinary community resources into what is needed for individual consumers. Consumers who need adaptive equipment may not necessarily need something made "for the handicapped." They may be able to piece together locally available goods and services that are cheaper and more readily available. The emphasis is on allowing people to do things for themselves and avoiding dependence upon the service system. One example of innovation is the center's use of UPS or Pepsi Co. to deliver equipment to another part of the state free of charge. As executive director Carol Kinney puts it, "We know who goes where. If the center needs something delivered in another part of the state, we call around to see who's going. We are organized and connected to others in the community. We often say that Wyoming is a small town with long roads." Contacts No formal arrangements exist with area nursing homes, but social workers and administrators are among the most important contacts the center has in assisting someone to leave the nursing home. Most of these professionals do not have rehabilitation or independent living backgrounds, but are usually supportive once the center explains independent living services and philosophy. Bob Carbon initiated these one-on-one education efforts, but staff or consumers currently train nursing home employees. The center tries to find someone with a disability that matches the disability of the resident who wants to move in order to show an example of independence and self sufficiency--usually enough to convince the nursing home staff of the viability of independent living programs. Because of the rural nature of the service area, center staff must maintain contacts with a plethora of agencies and service providers. Everyone must work together creatively to arrange a service package that will allow an individual to return to his or her community. Services may include meals on wheels, personal assistance (provided through a Title XIX Medicaid waiver), housing modification, or a visiting nurse. Most people will return to a farm house or a very small community and may find themselves ineligible for a needed service because it is only provided in the next town or county. Volunteer organizations and churches often must fill in the gaps. In and around Casper, a depressed economic climate and limited occupational opportunities are causing young adults to leave the area. As a result, many elders find themselves with little family support. Consumers, center staff, and community resources must work together to construct an emotional as well as physical support system for the consumer. Senior centers help to fill in this gap for those with transportation who can get to the center, but those without transportation remain isolated. Some nursing homes are also establishing semi-independent living arrangements and subsidized apartments to meet some of these needs. Resources The center's annual operating budget is approximately $850,000 and is derived from Title VII, Parts B and C, and Chapter Two. Since all of these resources are available to assist with the transition process, it is impossible to judge the total resources allocated to these services. Multicultural Issues One of the most interesting facets of WILR's innovative rural program is the services it offers to the 9,000 Native Americans in Wyoming. Wind River Indian Reservation houses two separate and historically warring tribes, the Shoshone and the Arapaho. Some Sioux, originally from a reservation in South Dakota and now scattered throughout the state, are also served by the center. The center has struggled with how to deliver culturally competent services since its inception, and last year used Chapter Two funds to hire a staff person to serve the elderly blind Native American population. This staff member is a Native American with a disability herself; she speaks both the Shoshone and Arapaho languages, and moves comfortably between Native and Anglo cultures. Her presence has resulted in a resounding increase in the number of elderly blind consumers served by the center. Barriers Not surprisingly, lack of transportation and personal assistance are the two major barriers to making transition into the community. Only two cities in the entire service area have accessible transit systems. Portions of the rest of the state are served by paratransit services, but the infrequency and restriction of service make them difficult to use. The only personal assistance available in the state is provided under a Title XIX Home and Community Based Services waiver. Only those deemed at high risk of institutionalization can receive personal assistance services, which are based on a medical service model. Individuals acquire personal assistants through home health agencies and have little control over who provides the service and conditions under which the service is provided. Each county has a limited number of "waiver slots" available--never enough to meet the need--and other counties have slots but no personal assistance providers. In either case, because the services are so limited, the center works with respite care, visiting nurses, homemaker services, family, and even volunteers to piece together enough hours to allow the individual to live in the community. Lack of accessible housing is also an issue, since laws requiring access generally apply only to new multi-family constructions, and few new units are being built in rural areas. Most houses in Wyoming require major modifications to become functionally accessible because of the age of most structures. A related problem is the high percentage of mobile homes in the state, most of which are very difficult to modify. A simple modification, such as widening a doorway or installing a grab bar, may cause structural damage. Center staff must be extremely resourceful in dealing with these obstacles. Staffing has not been a serious problem for this program: many staff have been with the center for over ten years. The service area of each staff person is restricted to 100 miles, so little overnight travel is required. The ability to work from home, flexibility of work schedules, and autonomy in decision making are major factors in staff longevity. One problem with this arrangement is that staff feel isolated and out of touch with their peers, resulting in significant telephone usage. The center has recently purchased computers, and staff now keep in touch through a computer network. Evaluation No statistical information is kept on the number of individuals who move from or are kept out of nursing homes. But statistics do show that the center serves a predominantly older population; the average age in the elderly blind program is approximately 74.8 years and rising, and the majority of consumers in other center programs is over 55. During the last eight years, the center has served 1,326 people, 724 in the last three years. Almost half of these consumers were 55 and older. Statistics also show that staff continue to provide more services to increased numbers of people with the same limited dollars, while maintaining a high quality of service. The center throws a party every time a consumer is "saved"--kept out of a nursing home or institution. Sometimes a seemingly insignificant service, such as a $450 talking glucose monitor for an elderly diabetic, results in a "save." In another case, a medication evaluation allowed a consumer to remain home. In some cases, consumers increase their dignity and quality of life while choosing to remain in a nursing home. One visually impaired man in a nursing home became more independent when he received a closed circuit TV and mobility training. This learning disabled man had his first opportunity to learn to read at age 72 and was able to read a book to his grandchild before he died. Replication This program could be replicated by any rural center with dedicated and creative staff willing to think broadly about options and work creatively with other service providers. A board member, staff member, or consumer with a severe disability is also essential to educate service providers about independent living and to provide a role model for consumers. Another plus is the attitude of self-sufficiency and frontier spirit found in most rural areas--key ingredients for success in any program. Topeka Independent Living Resource Center Topeka, Kansas Introduction The Topeka Independent Living Resource Center (TILRC) was formally initiated in 1980 with a grant under Title VII of the Rehabilitation Act. During the last 15 years, the center has grown from a very small organization started by a local disability group to a large center with a staff of 37 and a budget of approximately $7 million. The center provides core services to Topeka, a city with a population of about 100,000, and Shawnee County, with a population of about 20,000 people. These services include independent living skills training, peer and legal advocacy, communications services such as interpreters, housing assistance through referral and advocacy, and services to the deaf-blind population. The center also assists consumers with relocation by providing transportation and sometimes even muscle power to move furniture. Additionally, the center furnishes PAS to about 50 of the 105 counties in Kansas and has hired an attorney to provide legal assistance, Social Security benefits counseling, and advocacy to consumers around the state upon request. TILRC strongly emphasizes visible, in-your-face advocacy on ADA compliance and enforcement of other civil rights laws. There is much overlap of center staff and consumers with the local ADAPT (American Disabled for Attendant Programs Today) chapter, which makes collaboration for advocacy easy. The center is proud of its vigorous commitment to community change and the lack of hierarchy between consumers, staff, and board members. Project Initiation Mike Oxford, the current executive director, joined the TILRC staff in 1991. He arrived at the center with experience assisting people to leave state hospitals, detailed knowledge of Medicaid waiver regulations, a deep commitment to independent living philosophy, and an intimate involvement with the local ADAPT chapter. He was placed in charge of designing and implementing a strong independent living core service program. When he arrived, the center had a staff of eight people. He felt a strong desire not only to increase the center's advocacy, but also its service accountability. Shortly after his arrival, Mike became assistant director and instituted a staff training program on independent living background and philosophy. The History of Independent Living, a monograph produced by the Kansas Research and Training Center, helped him to familiarize the staff with Section 504 of the Rehabilitation Act and with the demonstrations of 1977 against the U.S. Department of Health Education and Welfare to force promulgation of implementation regulations. The monograph also highlights early movement leaders, such as Judy Heumann, Ed Roberts, and Marca Bristo, and features descriptions of early ADAPT demonstrations for accessible transportation. Mike was concerned that people with mental retardation, traumatic brain injury, and long- term mental illness were not being served by the center. He showed videos about deinstitutionalization and taught staff about "normalization" and other concepts in the developmental disabilities/mental retardation (DD/MR) movement (Wolfensberger, 1972). He tried to get staff to understand that independent living is not a static concept; that the ability to function and the level of assistance needed might vary from person to person, but that everyone deserves a shot at independence and freedom in the community. No one should be written off as too severely disabled to benefit from independent living services. This philosophy puts the burden upon the teacher, trainer, or counselor to present the material appropriately and to advocate for and to provide the community support necessary for each individual to benefit. Additionally, Mike worked with TILRC staff to construct independent living plans with meaningful goals and objectives, emphasizing not only services, but rights and responsibilities. He reorganized paperwork demands so that staff could get out of the office and provide services in the community--in the consumer's home, at a local McDonalds, or even under a bridge. The center recently has begun to serve a large contingent of homeless individuals through these efforts, assisting them with housing location and community services. Another impetus to strengthen independent living programs came from an $86,000 contract to provide independent living services to clients of the state vocational rehabilitation agency. As center staff worked to strengthen independent living services for this population, they realized that many contract activities were transferrable to other populations, particularly to people living in nursing homes. In addition to forces inside the center, several external activities focused the center on assisting people to leave institutions and nursing homes. First, during the late 1980s and early 1990s, the state of Kansas began downsizing and closing institutions. Much of the rationale was based upon cost savings, but some state officials realized that more humane, responsive services could be provided in the community. Additionally, parents, service providers, and advocates applied pressure to step up community placement activities. The center, with its new emphasis on serving a cross-disability population, wanted to play a significant role in these efforts. Building upon its activities to teach residents of a local hospital-based care facility about their rights, the center began to explore the possibility of serving the DD/MR population. TILRC soon discovered that a license was necessary to attain funding and referrals for people from Community Mental Retardation Centers (CMRC), the gatekeepers for people in state hospitals. The center applied for a license to serve this population, even though center staff viewed licensure as a "meaningless paperwork process," according to Mike. The second major impetus to focus the center on institutionalized consumers was passage of the state Self-Directed Personal Assistance Act in 1988, giving people with disabilities the right to direct their own personal assistance services. Prior to passage of the Act, all personal assistants were employees of the state, based upon an Internal Revenue Service (IRS) ruling that required the funding source to deduct taxes and Social Security payments from the wages of the assistant. Consumers were quite unhappy with this arrangement since it per