ATTENDING TO AMERICA PERSONAL ASSISTANCE FOR INDEPENDENT LIVING Report Of THE NATIONAL SURVEY OF ATTENDANT SERVICES PROGRAMS IN THE UNITED STATES World Institute on Disability April 1987 WORLD INSTITUTE ON DISABILITY Board of Directors Philip R. Lee, M.D. Professor of Social Medicine and (Chair) Director, Institute for Health Policy Studies, University of California, San Francisco Jerome Tobis, M.D. Professor of Rehabilitation Medicine, University of California, Irvine Ann Eliaser Compass Associates, San Francisco Robert F. Kerley Vice Chancellor Emeritus, University of California, Berkeley Irving Kenneth Zola, Ph.D. Professor of Sociology, Brandeis University, Waltham, Massachusetts Russell E. O'Connell Administrator, The American Short- Term Therapy Center, New York Norman Acton President, Acton International, Miles, Virginia Bruce Alan Kiernan Director of Development, Federation of Protestant Welfare Agencies, New York Andrew McGuire Executive Director, The Trauma Foundation, San Francisco General Hospital, San Francisco Charles La Follette Executive Vice President, United States Leasing International, Inc. San Francisco Edward V. Roberts President, World Institute on Disability Judith E. Heumann, M.P.H. Co-Director, World Institute on Disability Joan Leon Co-Director, World Institute on (Secretary-Treasurer) Disability ATTENDING TO AMERICA: PERSONAL ASSISTANCE FOR INDEPENDENT LIVING A SURVEY OF ATTENDANT SERVICE PROGRAMS IN THE UNITED STATES FOR PEOPLE OF ALL AGES WITH DISABILITIES Simi Litvak, Ph.D., O.T.R. Hale Zukas Judith E. Neumann, M.P.H. Preface by Irving Kenneth Zola, Ph.D. Project Contributors: Project Director: Curtis "Kitty" Cone Joan Leon Nancy Ferreyra Marian Conning Ed Roberts Principal Investigator: Simi Litvak WORLD INSTITUTE ON DISABILITY 1720 OREGON STREET BERKELEY, CALIFORNIA 94703 (415)486-8314 APRIL 1987 Attending to America: Personal Assistance for Independent Living Simi Litvak, Ph.D., O.T.R. Hale Zukas Judith E. Heumann, M.P.H. Published by World Institute on Disability Berkeley, California Library of Congress Catalog Card Number: 87-50213 ISBN 0-942799-00-3 ii ACKNOWLEDGMENTS This report has been funded by The Charles Stewart Mott Foundation, The San Francisco Foundation, The Wells Fargo Foundation of San Francisco and The Easter Seal Research Foundation. We thank these organizations for their support. Several months before publication, a draft of this report was presented to a critical audience of knowledgeable individuals. The invaluable philosophical, methodological, technical and editorial advice offered by the following people as a result was greatly appreciated: Philip R. Lee, M.D., Chair of WID's Board of Directors; Russell E. O'Connell, Jerome Tobis, M.D., and Irving Kenneth Zola, Ph.D., members of WID's Board; Elizabeth Boggs, Ph.D., Gerben DeJong, Ph.D., Fred Fay, Ph.D.*, Lex Frieden, Ph.D.*, Emma Gunterman, Gini Laurie, Margaret Nosek, Ph.D.*, Adolf Ratzka, Ph.D.*, Laura Rauscher*, Helga Roth, Ph.D., Max Starkloff*, Susan Stoddard, Ph.D., Juanita Wood, Ph.D., and Phyllis Zlotnick*, members of WID's Attendant Services Advisory Committee. Special recognition must be given to the following WID staff members who made this project successful: Curtis "Kitty" Cone, who did the initial planning of the questionnaire and conducted part of the interviewing; Nancy Ferreyra, who conducted interviews, prepared the bibliography, assisted in data analysis, and answered correspondence and information requests; Hale Zukas, who was engaged in planning, editing and policy development at all stages of the project; Sandy Swan, who lent her computer and research skills and common sense; Marian Conning, who typed all the versions of the report, kept track of funds, offered sound suggestions and generally held down the fort; Helga Roth, who cheered us on and helped with editing; Joan Leon, who wrote the original proposal for the project and directed it through all its various stages; Mary Lester, who prepared the graphs; and Judy Heumann and Ed Roberts, who provided the ideological/philosophical overview for the project and the report. In addition, we would like to thank Carol Silverman, Ph.D., Instructor in Sociology at the University of California, Berkeley, who all but donated her research and computer skills to this project. Simi Litvak Berkeley, California January, 1987 * Individuals who use personal assistance services iii PREFACE By Irving Kenneth Zola, Ph.D., Department of Sociology, Brandeis University Independence and self-reliance are strongly held American values. They are the key to any claim that we are a truly open society. For it is reasoned that if anyone would only try hard enough, s/he could eventually succeed -- the Horatio Alger myth. That such concepts have also crept into our rehabilitation literature should be no surprise. Thus traditional stories of successful rehabilitation continually stress the individual's ability to overcome his/her particular chronic disease or disability. In turn, individual qualities like courage, virtue, stick-to-it-ness, and the desire to "go it alone" were the very praiseworthy personal characteristics; and high scores on such scales as The Adaptation in Daily Living (ADL) (which measured the individual's ability to do many personal care activities by him/ herself) were the behavioral ones. The founders of the Independent Living Movement were very different sorts of people. Their scores on the ADL scales were near the bottom and they were people on whom traditional providers of care had given up -- people for whom not only a productive life but even a meaningful one was deemed impossible. Neither they nor their families accepted the judgments of experts and in their struggle and their answer the Independent Living Movement was born. Their stories of success are different. Without negating the importance of personal qualities and the iv improvement of one's functional abilities, they emphasized the necessity of removing architectural barriers, changing societal attitudes, and using help whenever and wherever they could get it. In all the years I've heard Ed Roberts speak (To those who don't know him, he's one of those "rejects" mentioned above -- a man, post-polio, who uses a respirator and a wheelchair and was deemed unworthy of California's rehab dollars. He went on to cofound The California Center for Independent Living and later the World Institute on Disability and in-between became California's Commissioner of Rehabilitation and a MacArthur Fellow), before beginning, he introduces is personal assistants by name and briefly details the latter's role in Ed's being "here." This gesture concretizes a cornerstone of the whole Independent Living Movement (DeJong, 1983).Independence is not measured by the quantity of tasks we can perform without assistance but the quality of life we can have with help. People have often gotten help from others but it was often given in the context of duty and charity (Scotch, 1984). Help in the context of Independent Living is instead given within the framework of a civil right and a service under the control of the recipient -- where, when, how and by whom. This cornerstone of the Independent Living Movement has long been argued about but little studied. DeJong (1977) surveyed the services of one state; DeJong and Wenkler (1983) did a comparison of several; and Laurie (1977), a timely national overview. V Within the last three years DeJong (1984) and Ratzka (1986) have provided in-depth descriptions of the progress and promise in the Netherlands and Sweden. This current report, prepared by Simi Litvak and sponsored by the World Institute on Disability, is a much needed American response -- a detailed survey of all the United States which gathered data from some 154 attendant service programs serving almost a million people Though people with physical disabilities were those most often served, the programs also included ones serving those with brain injuries, intellectual and emotional problems. The 17-page questionnaire measured their development, administration, funding sources, and degree of conformity to the ideal Independent Living Model. Despite the wealth of data, this report is no mere compilation of tables and statistics. It is an extraordinarily self-critical document, telling the reader what it gathered well, poorly, and not at all. It names names and articulates issues. While echoing the need for further information, in a series of recommendations it lays down the gauntlet of what must be done to make all our citizens independent. While documenting the programs already in existence, it also describes the underserved and points to the future (the ever increasing number of newborns with disabilities as well as increasing aging of our population). It is clear that many who will read this report will not at present have a disability. But if the data on aging and genetics are correct, it is unlikely that anyone reading it will not in their lifetime have to face the issue for him/herself or in his or her families. vi But at long last, we now have some baseline data. Personal Assistance for Independent Living lays down how far we have come and how far we have yet to go. REFERENCES DeJong, Gerben. (1977). Need for Personal Care Services by Severely Physically Disabled Citizens of Massachusetts. Personal Care and Disability Study, Report No. 1 and No. 2. Waltham, MA: Levinson Policy Institute of Brandeis University. DeJong, Gerben. (1983). "Defining and Implementing the Independent Living Concept" in Nancy Crewe and Irving Kenneth Zola (Eds.). Independent Living for Physically Disabled People, pp. 4-7. San Francisco: Jossey-Bass. DeJong, Gerben. (1984). Independent Living and Disability Policy in the Netherlands: Three Models of Residential Care and Independent Living. Report No. 7. New York, NY: World Rehabilitation Fund. DeJong, Gerben and Wenker, Teg. (1983). "Attendant Care" in Nancy Crewe and Irving Kenneth Zola (Eds.). Independent Living for Physically Disabled People, pp. 157-170. San Francisco: Jossey-Bass. Laurie, Gini. (1977). Housing and Home Services for the Disabled. New York, NY: Harper & Row. Ratzka, Adolf D. (1986). Independent Living and Attendant Care in Sweden: A Consumer Perspective. Report No. 34. New York, NY: World Rehabilitation Fund. Scotch, Richard. (1984). From Good Will to Civil Rights. Philadelphia: Temple University Press. vii TABLE OF CONTENTS ACKNOWLEDGEMENTS ii PREFACE iii LIST OF TABLES ix LIST OF FIGURES xi Chapter Page I INTRODUCTION: SIGNIFICANCE OF ATTENDANT SERVICES.... 1 The Need for a National Personal Assistance Program and Policy 2 Why WID is Studying Attendant Services 7 The Concept of Personal Assistance and Attendant Services 9 Potential User Population for Attendant Services 13 Overview of the Survey 17 II DEVELOPMENT OF PERSONAL ASSISTANCE SERVICES IN THE U.S 19 Medicaid - Title XIX 19 Title XX and Social Services Block Grant (SSBG) 21 Older Americans Act - Title III 22 Medicaid Waivers 23 Solely State and Locally Funded Programs 26 Veterans' Aid and Attendance Allowance 27 III PROGRAM GOALS, ADMINISTRATION AND FUNDING 29 Goals 29 Number per State 32 Year of Implementation 32 Administering Agencies 35 Funding Sources 37 IV PROGRAM STRUCTURE 39 Eligibility 39 Services 46 Hours Services Available 52 Maximum Service Amounts Allowed 55 Direct Service Providers 57 Determination of Services Allowed 64 Medical Supervision 66 viii V PROGRAM CONFORMITY TO THE INDEPENDENT LIVING MODEL 67 VI PROGRAM UTILIZATION AND EXPENDITURES 78 Service Utilization 78 Expenditures 83 Expenditures From Programs Not in WID Survey 85 VII AVAILABILITY OF SERVICES ACROSS THE U.S 87 VIII NEED VS. ADEQUACY OF THE SYSTEM TO MEET THAT NEED 91 IX CONCLUSIONS AND RECOMMENDATIONS 95 BIBLIOGRAPHY 115 APPENDICES 128 A. Definition of Terms 129 B. Methodology 135 C. List of Programs Identified by State 152 D. Survey Instrument (Questionnaire) 171 ix LIST OF TABLES Table Page 1 Number of Programs by State 30 2 Percentage of Personal Assistance Programs Funded by Various Sources 38 3 Age Ranges Eligible by Programs 40 4 Disabilities of Individuals Eligible to be Served 41 5 Programs Having the Goal of Encouraging People to Work 42 6 Partial List of Eligibility Requirements 45 7 Number and Types of Programs in Sample 52 8 Hours Service Available 54 9 Days Service Available 54 10 Hours & Days of Service Availability 54 1 11 Types of Providers Utilized by Programs 57 12 Provider Type Mix 57 13 Level of Training Required for Individual Providers 59 14 Circumstances in Which Programs Allow Relatives to be Paid Attendants 60 15 Number of Benefits and Average Hourly Wage by Provider Type 62 16 Number of Programs Allowing Consumers to Train, Pay, and Hire and Fire Attendants 63 17 Bases for Service Evaluation 65 18 Those Who Decide on Types of Service & Hours 65 19 Number of Users Served by Attendant Service Programs at Various Levels of Conformity to the Independent Living Model 70 20 Expenditure per User by Programs at Various Levels of Conformity to the Independent Living Model 71 x 21 Degree of Conformity to Independent Living Model by State 75 22 Programs with the Highest Independent Living Orientation. 77 23 Comparison Across States of Expenditures and Total Clients of Attendant Service Programs 80 24 Number and Percentage of Programs Serving People with Various Disabilities 82 25 Age Groups Served 82 26 Total Expenditures on Attendant Services by Funding Source 84 27 Number of Programs per State Offering Various Types of Personal Assistance by Ages Served 88 28 Comparison of Home Care Survey Estimates of Need for Assistance in Personal Maintenance Tasks with Number Actually Being Served in Publicly Funded Programs from WID Survey 93 xi LIST OF FIGURES Figure Page 1 Number of Attendant Service Programs Implemented by Year 34 2 Types of Administering Agencies 36 3 Income Eligibility for Single Persons by Number of Programs 43 4 Percentage of Programs Offering Various Types of Personal Maintenance/Hygiene Services 47 5 Percentage of Programs Offering Various Types of Household Assistance Services 48 6 Percentage of Programs Offering Various Types of Related Services 49 7 Maximum Number of Service Hours Allowed per Week 56 8 Degree to Which Programs Conform to Independent Living Model 69 9 Degree to Which Title XIX Funded Programs Conform to Independent Living Model 73 10 Degree to Which Title III Funded Programs Conform to Independent Living Model 73 11 Degree to Which SSBG Funded Programs Conform to Independent Living Model 74 12 Degree to Which Totally State and/or Locally Funded Programs Conform to Independent Living Model 74 CHAPTER I INTRODUCTION The need for community-based personal assistance services for independent living and the lack of a nationwide policy direction and mechanism for meeting the need has become an issue of major significance for disabled people of all ages who feel these services are critical to their ability to control their lives. Along with people who are disabled and their families, advocates, legislators and social policy makers throughout the United States and abroad have placed personal assistance services at home and in the community on the national agenda. Personal assistance involves assistance, under maximum feasible user control, with tasks aimed at maintaining wellbeing, personal appearance, comfort, safety and interactions within the community and society as a whole. In other words, personal assistance tasks are ones that individuals would normally do for themselves if they did not have a disability.1 The survey, which is the subject of this report, indicates that there are approximately 850,000 people receiving some sort of community-based, publicly-funded personal maintenance and 1 These tasks include: 1) personal maintenance and hygiene activities such as dressing, grooming, feeding, bathing, respiration, and toilet functions, including bowel, bladder, catheter and menstrual tasks; 2) mobility tasks such as getting into and out of bed, wheelchair or tub; 3) household maintenance tasks such as cleaning, shopping, meal preparation laundering and long term heavy cleaning and repairs; 4) infant and child related tasks such as bathing, diapering and feeding; 5) cognitive or life management activities such as money management, planning and decision making; 6) security-related services such as daily monitoring by phone; and 7) communication services such as interpreting for people with hearing or speech disabilities and reading for people with visual disabilities. 2 hygiene, mobility and household assistance services. On the basis of the National Health Interview Survey and surveys of people who are institutionalized, we estimate that there are an additional three million people who could benefit from such services, but who currently are not receiving them from community-based, publicly-funded programs (Czajka, 1984, pp. 1317). In other words, for every person who is actually receiving community-based, publicly-funded personal assistance services, there are three people who could benefit from such services but who are not receiving them. Moreover, almost all the service programs which do exist are inadequate. Seldom do they offer the combination of personal assistance services necessary to enable people who are disabled to function satisfactorily at home and in the community. Distribution of these programs is uneven across the United States, eligibility criteria vary widely, and direct service providers are poorly compensated. The Need for a National Personal Assistance Program and Policy The need for personal assistance services has grown over the last few years because of several factors. First, the past few decades have seen major advances in medical technology. These advances have increased the ability to treat people who have experienced serious trauma, illness and birth-related disability, with the result that many individuals who would have died in earlier years are now surviving. Many of these people, however, end up with disabilities which interfere with their ability to perform activities of daily living independently. 3 Second, declining mortality and lengthening life expectancy have meant that an ever-increasing number of people in the U.S. population are old people (Van Nostrand, 1984). This demographic shift in itself has expanded the disabled population, since loss of functional ability (i.e. ability to perform activities of daily living) often accompanies the illnesses and injuries that occur more commonly among older people. The survey upon which this report is based shows that at least 77% of the people currently receiving personal assistance services are older people over the age of 60 or 65. Third, the demand for personal assistance services has expanded as a result of the growing emphasis on keeping and taking disabled and elderly people out of institutions. Custodial institutions are no longer an accepted means of meeting the personal assistance needs of disabled people of any age. This shift in attitude coincided with the emergence of the Independent Living Movement which, in conjunction with advocacy groups, was organized to foster independence and minimize the dependence of disabled people. In the fifteen years since the first Independent Living Program run by disabled people was founded in Berkeley, California, over 200 such programs have been established across the country. A top priority of the Independent Living Programs has been to get and keep disabled people out of institutions. It was very clear to these activists that, on the one hand, the successful deinstitutionalization of people with extensive disabilities, as well as the prevention of institutionalization 4 and avoidance of dependency, rested substantially on the availability of personal assistance services in the community. But, on the other hand, the existing service system lacked a strong community-based orientation and therefore did not offer the services that foster independence. Beginning in the late 1960's, people with mental retardation, along with their families and advocates, successfully pushed for normalization of the lives of people with intellectual disabilities. Over the past two decades many large state institutions for people with intellectual disabilities have been closed or had their populations greatly reduced. Various types of small group living arrangements have been established in communities to take their place.2 There has been a similar deinstitutionalization trend in the treatment of people with mental or psychiatric disabilities. Community treatment for people with mental disabilities was promoted in the late 1950's and 60's and the large state hospitals discharged vast numbers of patients to an uncertain existence in cities all across the U.S. Fourth, the emphasis in meeting the needs of older people has shifted from institutional care (particularly nursing home care) to home and community based assistance. Older people and their advocates are waging a struggle to develop a "continuum of 2 More recently, living arrangements offering greater degrees of independence have been established where assistance with activities of daily living is provided only to the extent needed. For example, a number of people may live in a small apartment complex and share the services of an assistant who comes in as needed to help with paying bills, filling out forms, shopping and so on. 5 long term care" where nursing homes are only one of several elements, rather than the primary locus of assistance for older people with functional limitations. In some states the establishment of new nursing homes has declined greatly, though this has not always been accompanied by the development of community-based services. A fifth factor increasing the demand for personal assistance services has been the transformation U.S. families have undergone over the past several decades. Changes have occurred which have made families less able to take upon themselves the job of providing personal assistance to their disabled members. A majority of working-age women now hold jobs outside the home. Rising divorce rates, shrinking family size and the growth in single-parent families have all contributed to the family's decreasing ability to provide personal assistance services for their disabled members of all ages (Oktay & Palley, 1983). From an Independent Living standpoint, moreover, it is often undesirable for family members to provide such services, even if they are able to do so. Employing a personal assistant allows all the family members more freedom and enables the member with a disability to function as an autonomous being rather than remain in a relationship that fosters dependency. Finally, during the late 1970's and early 1980's, the federal and state governments became very interested in the replacement of institutional care by community-based services, which include personal assistance services, because this seemed to be a more economical way to treat disabled people unable to 6 manage completely for themselves. The need for community-based personal assistance services, then, is clearly on the national agenda. Despite the growing need and interest, however, the federal government has neither promoted the development of these services nor established a coherent policy on the issue. 3 Jurisdiction over various personal assistance programs and policies is divided among numerous federal agencies and congressional committees. There is no coordinated "system". In the absence of a comprehensive federal policy and funding for personal assistance services, some states have tried to piece together several federal funding sources into a state program; a few other states have tried to meet the need by developing their own policy and program; still other states have done nothing in the area and, as a result, have almost no personal assistance services available. The lack of a comprehensive, coordinated national policy often means that, even where the services are available at all, users either have to maneuver through a fragmented maze of service programs in order to put together a package of required services, make do with services that are inadequate, or remain in an institution, nursing home, or isolated at home with their families. 3 In contrast, a nursing home policy does exist. Currently the government, through Medicaid (see Chapter II), will pay for people who are disabled and who meet the income guidelines to live in nursing homes for the rest of their lives. Clearly a policy for personal assistance services would greatly reduce the need for nursing homes for such people. 7 In addition, those programs that do exist usually provide assistants only for poor people. This means that people either need to have incomes below the poverty level or they need to earn enough not only to support themselves but also to pay for an assistant. The resulting need to earn a relatively high income thus discourages people from working, thereby increasing, rather than decreasing, public expenditures on the disabled.4 Why WID is Studying Attendant Services The World Institute on Disability is well equipped to examine the issues surrounding personal assistance services because its staff thoroughly recognizes, from a number of perspectives, that personal assistance services are often the key to Independent Living for people of all ages with moderate and extensive disabilities. In the first place, those staff who use assistants have, of course, learned the importance of personal assistance services in their lives. Second, several staff members have held key policy positions in state or federal 4 These disincentives to employment built into the current attendant service eligibility requirements should eventually be eroded by Section 1619 of the Social Security Act which was made permanent in November of 1986 and which takes effect June 1987. Under Sec. 1619, disabled people already receiving SSI who go to work are now allowed to retain Medicaid-funded medical benefits and federally-funded attendant services, where they exist, as long as the disabled individual: 1) continues to meet the SSI resource or asset limits, and 2) his or her earnings do not exceed a "reasonable equivalent" of the combination of previous SSI payments, Medicaid medical benefits and publicly-funded attendant services. In addition, individuals may shift back onto full SSI benefits if for some reason the job does not continue. Unfortunately, people receiving personal assistance services from solely state-funded programs may not necessarily retain these services unless the state links eligibility to SSI eligibility. Obviously, Sec. 1619 will have no impact on the bulk of personal assistance service users, i.e. people over ages 60 or 65. 8 government and have an appreciation of the pluralistic nature of the policy process and the role the respective levels of government, as well as the private sector, play in setting social policy. Third, WID was established by several founders of the Independent Living Movement in order to examine public policy issues from the perspective of that movement. Fourth, the Institute is located in California, which has the oldest and largest publicly-funded personal assistance service program in the country.5 We are asked continually by people with disabilities how the California system can be used as a model in other localities. We are acutely aware of the dearth of adequate personal assistance services in most other parts of the country despite the growing demand for those services. It is clear that the lack of satisfactory personal assistance services is a major obstacle preventing many people with disabilities from achieving the goal of living independently. On the one hand, then, the WID staff know well the pivotal importance of personal assistance services to people with a wide range of disabilities. On the other hand, they have also been very aware of the inadequacy and spotty distribution of personal assistance services across the country and of the complete absence of information on the nature and extent of those services 5 This is no coincidence. We believe, in fact, that the first Independent Living Center was established in California because the well-developed California personal assistance service system provided disabled Californians, including many of the WID staff, the services they needed to enable them to meet and work together for independence. that do exist. These considerations led the World Institute on Disability to undertake a survey of every publicly-funded personal assistance program in the country offering personal maintenance, hygiene, mobility and household assistance services in order to provide for the first time an accurate and comprehensive picture of the state of these key services in the United States today. This report presents the findings of that survey. Other significant sectors of the disabled community, as well, are recognizing personal assistance services as an issue whose time has come. The National Council on the Handicapped (NCH), a body which advises Congress and the President on policy issues related to disability, has selected personal assistance services as one of its priority issues. We have relied on the results of their conferences on personal assistance services, which WID helped organize, in conducting this research. We believe that the data presented in this report begins to provide a basis on which the National Council on the Handicapped and other policy makers, planners, and consumer organizations can evaluate the current policies and services and determine what needs to be done to develop an adequate and equitable national system of personal assistance services for all those who need them. The Concept of Personal Assistance and Attendant Services This report covers the availability of attendant services only. Attendant services are a subset of the full range of personal assistance services disabled people need to function 10 independently in the community (see footnote 1, page 1, and Nosek, 1986). Attendant services include assistance with personal hygiene, mobility and household maintenance tasks. Z1;. Often these services are separated into groups and offered by separate programs. To compound the confusion, they are called by it other names as well: personal care services, personal care attendant services, home health aide services, homemaker services, chore services. 6 (See Appendix A for some definitions.) Our conception of appropriate personal assistance services goes much deeper than a simple listing of tasks, however. Of major importance is that personal assistance service users have the opportunity, if desired, to exercise as much control as they are capable of handling over the direction and provision of these services - i.e. who does them, how, and when. This concept of personal assistance is the Independent Living Movement's preferred model of service provision. The model rests on the philosophy that to be independent means to be empowered and self- directed. Independence does not mean that one must be able to perform all tasks alone without help from another human being. This distinction may appear to some as not very significant, but it is absolutely crucial for people of all ages with extensive disabilities. Such individuals may be able to perform few if any 6 In discussing and defining personal assistance and attendant services, we deliberately avoid the use of the term "care" (e.g. attendant care, personal care, etc.) because it implies that the disabled person passively receives the ministrations of the attendant. In our view, care is what sick people receive. Disabled people are not sick and, therefore, do not need "care". They need an assistant. 11 daily living tasks without assistance, but this fact has no bearing on their right to determine when, where and how these tasks are performed. For people who are unable or unwilling totally to direct their own services, the option to receive services from assistants who are trained and supervised by a public or private agency should be available. In addition, personal assistance services are personal assistance services even when they are performed by members of one's family. Consequently, family members who provide such services at the request of the user deserve to receive compensation for their labor. People with extensive disabilities may require 20 or more hours of assistance per week, the equivalent of a half-time job. This amount of assistance, which is quite beyond what family members would do for each other if none were disabled, clearly cuts into the time that would otherwise be available for outside employment and other familial duties. The vast majority of people who provide volunteer personal assistance in the U.S. are women (Reaser, 1985). In particular, most of these volunteers are middle-aged women performing attendant services for an aging parent, because most of the people requiring personal assistance are older people. These volunteer assistants are often prevented from seeking paid employment, a situation which greatly contributes to poverty among women. Clearly, when families maintain disabled members outside of institutions, they may save the government much money, but providing these services on a volunteer basis substantially reduces the family's earning potential and may limit the person 12 with a disability from achieving full independence. Having to depend upon the charity or good will of family and friends places the user in a dependent rather than an independent position. In addition, when family members are forced by economic or other reasons to provide attendant services, the resulting stress can lead to psychological or physical abuse of the person who is disabled. The Independent Living conception of attendant services also recognizes the need to augment regular service delivery systems with both emergency and short-term services, commonly referred to as respite. Emergency attendant services provide assistants in cases of emergency, for example when attendants cannot perform their duties because of sickness or personal difficulties and not enough notice can be given to make other arrangements. In cases where a disabled individual lives alone and has no relatives or friends who can help out at the last minute, emergency back-up services are crucial. Short-term services are intermittent attendant services replacing family members or regular assistants on a scheduled basis. They enable the individual who is disabled to get both the assistance needed and an opportunity to be independent of the family for brief periods. Short-term personal assistance also allows the family member to leave the home for anything from a few hours for errands to an evening out or several weeks' vacation. Emergency and short-term workers should be trained so they can go into a variety of situations, including homes with non-directing disabled persons. Pools of such workers should be 13 available.7 Finally, personal assistance services are only a part of the "Complex Cube of Long Term Care" which "includes the areas of health care, social services, housing, transportation, income security and jobs" (Oriol, 1985, p. 15). Personal assistance services by themselves are not sufficient to enable people with disabilities to live to their maximum potential in the community but they are absolutely necessary to achievement of this goal. Potential User Population for Attendant Services The population of potential users of attendant services is large and diverse. It includes people of any age and with any disability - be it physical, sensory, intellectual or mental- which results in long-term functional limitations that impair an individual's ability to maintain independence (see Zola, 1986 for a fuller discussion). 7 Short-term services are part of the continuum of personal assistance services. Some people need these services daily, some need them several times a week and others need services on occasions when family members have to leave the home. Short-term services serve the person who is disabled by breaking the chain of mutual dependency between the disabled family member of any age and the rest of the family. Power dynamics in families can be changed by another person coming into the home for brief periods. Because families may have to provide major amounts of service, the disabled individual may be made the victim of the family's stress. In these situations, the disabled individual needs a break from the family and the routine equally as much as the family. Short-term personal assistance should be seen as an opportunity for the disabled individual to get out of the house, go on visits, see a film or even take a trip. Usually the family goes away for a good time and the disabled person stays at home or, even worse, is sent to a hospital. 14 The notion of who needs or can use an assistant has expanded in the last few years. It is generally accepted that people with physical disabilities often need assistance. More recently, however, people with mental or intellectual disabilities but no physical limitations have also begun to use assistants to help them function effectively in the community. Such assistants may help people pay bills, keep financial records, make up shopping lists, deal with landlords, etc. The user population includes people of all ages. There has been a tendency to treat older people with functional limitations, disabled working age people and disabled children as three distinct groups with totally different service needs. However, older people who have functional limitations are disabled in the same sense that younger disabled people are- that is, they are limited in their ability to perform life- maintaining tasks without assistance. Whether young or old, disabled people may be at risk of isolation, physical harm and institutionalization because of their functional limitations. The causes of these limitations may vary somewhat, but the effects are often very similar. Furthermore, older people with functional limitations have as much need to maintain control over their lives and the services they receive as younger people with disabilities. Thus, not only are personal assistance services often the appropriate answer for many older people with disabilities, but the principles of the Independent Living Movement apply to them as well. If personal assistance has not been widely recognized as a 15 means of fostering older people's independence, the use of non- family paid providers to foster independence in disabled children has hardly even been considered. Making such assistance available has several benefits. It can alleviate financial pressure on families by allowing parents to take outside employment. This is particularly true in cases where a child with a disability needs assistance throughout the day and there are no volunteer resources available. Second, personal assistants for children can relieve the emotional strain that frequently develops within families as siblings (and sometimes parents) come to resent the disproportionate amount of time that parents must devote to a child who is disabled. Finally, providing personal assistants for children with disabilities allows them a more normal process of development and maturation. It allows them to go places (thus gradually expanding their range of mobility), engage in recreational pursuits, and- particularly important during adolescence - interact with peers. Also, children with disabilities, assisted by an attendant, can begin taking on family chores and duties - such as setting the table or taking out the garbage - just as non-disabled children do as a normal part of growing up. This list of benefits obtained by providing attendants for children of all ages could go on and on. The primary point, however, is that the process of developing one's independence and self-management skills commences long before a person with a disability reaches adulthood. It is a process that occurs 16 throughout the normal course of development that all children go through. Not only does the Independent Living view of the potential attendant service user population include people of all ages, it also includes people in various living arrangements. People with functional limitations who live independently obviously need assistance. People living with their families also need assistance; whether in the form of occasional short-term services or on a regular basis, so that the disabled person has more independence and the family member, relieved of attendant duties, is free to work and/or maintain the home. Attendants may also work for clients in various congregate living arrangements such as cluster housing and group homes. In these situations, attendants may be shared by several people, though this type of arrangement has drawbacks because it frequently means that the individual user loses control over when and how long the attendant is available. In addition, people can use personal assistance not only at home but also at work, recreation and travel. Corollary to this inclusive definition of who can benefit from personal assistance services is the proposition that the medical diagnostic category a person falls into should have no bearing on his or her eligibility for services, since people with similar diagnoses may have dissimilar functional abilities and face different sets of environmental constraints. Determination of need for personal assistance should be based on a functional assessment which measures one's abilities and limitations in 17 performing necessary activities of daily living within a particular environment. Overview of the Survey This report is based on the results of a survey - conducted by mail or telephone from February 1985 to January 1986 - of administrators of every program in the United States (excluding Puerto Rico and the U.S. territories) which provided personal maintenance and hygiene and/or household assistance services on either a regular or short-term basis. Programs for disabled people of all ages were included except those exclusively for people with mental disabilities ("mental illness") and/or people with intellectual disabilities ("mental retardation"). Because of fragmentation of the service system, these programs are administered separately and would have required substantial additional resources to locate and survey. One-hundred seventy-three programs meeting these criteria were identified. Nineteen of these, for various reasons, are not included in the results presented here. 8 A detailed discussion of the survey methodology can be found in Appendix B. A copy of the questionnaire is in Appendix C. The questions addressed by WID's survey and by this report are the following: 1. What are the goals of the programs? How are the programs structured? What are their administering 8 Throughout this report, when a table refers to data from fewer than the 154 programs in the data set, the actual number of programs responding to that item has been noted. 18 agencies, funding sources and eligibility criteria? What services are provided and who provides them? 2. How well do the programs meet scope and quality criteria for an adequate attendant services system developed by the participants at the July 1985 conference in Washington, D.C. sponsored by the National Council on the Handicapped in conjunction with the World Institute on Disability? 3. Where do programs fall along the continuum between the Independent Living and medical models? (See p. 67 for description of program models.) 4. What is the degree of attendant service utilization, i.e. how many people are currently receiving some type of attendant services? How does this number compare to the number of people who could benefit from such services? 5. Are attendant services equitably distributed across the U.S.? 19 CHAPTER II DEVELOPMENT OF PERSONAL ASSISTANCE SERVICES IN THE U.S. There are several federal and state programs that currently provide at least part of the constellation of personal assistance services needed by people who are disabled. The oldest and largest arose with the development of the U.S. social welfare system, in particular the 1965 amendments to the Social Security Act which established Medicaid (Title XIX) and the 1974 amendments which created Title XX, which in 1981 became the Social Services Block Grant program.9 Medicaid - Title XIX Medicaid was established to provide medical assistance to low-income people of all ages. There are no federal funding limits. The program is financed jointly by federal and state funds, with the state's share varying from 22.5% to 50%. In addition, the bulk of Medicaid funds go toward hospital, nursing home and institutional services. States are required minimally to deliver health-related home services from a certified Home 9 Medicare (Title XVIII of the Social Security Act) was also created in 1965 to provide health insurance benefits, primarily for those eligible for Social Security Retirement Benefits. Until recently, it provided medically related services to homebound people for a very limited period, post hospitalization. In the early 1980's the limitations on number of visits was removed. Though this obstacle has been removed, the "homebound" and "medically related" provisions remain. The homebound provision requires that recipients be so ill or disabled that they seldom if ever leave the house. And the medically related provision requires that all services provided must be certified by the physician as relating to maintenance of the individual's health. Even if interpreted liberally, these provisions continue to make Medicare a dubious source for personal assistance service dollars. 20 Health Aide or Registered Nurse. Beyond this minimum there are wide variations from state to state in home and community-based service benefits offered, groups covered, income eligibility criteria, cost sharing formulae and levels of provider reimbursement. States have the option to provide, in addition to home health services, "personal care services" in the home - such as dressing, feeding, bathing, ambulation and transfers - from a less skilled provider on a long term basis. Even with the "personal care" option and the Medicaid Home and Community-Based Services Waivers (see page 23), the thrust of Medicaid home-delivered services is still heavily weighted toward medically related services. Programs require frequent supervision by a Registered Nurse. Physicians must certify that services are in some way related to maintenance of an individual's health. Personal assistance services have to be delivered by certified Home Health Aides or less skilled agency- trained, not user-trained, individuals. A few cities and states have found innovative ways to work within the medically oriented Medicaid framework and still make it possible for individuals who are disabled to maintain a great deal of control over who delivers the service and how it is delivered. In Denver, Boston, New York City and a few other areas, the Independent Living Programs have been designated as Home Health Agencies. They in turn allow disabled people to hire and train their own assistants, with Center approval, and some even pay the assistant's wages directly to the consumer who then pays his or her own assistant. 21 Title XX and Social Services Block Grant (SSBG) Between 1975 and 1981, Title XX of the Social Security Act provided funding for four social service program goals, one of which was the prevention of institutionalization by providing community or home based services including homemaker, chore and home health aide services. 10 Title XX was restructured in 1981 as a block grant to states, generally allocated on the basis of the state's population, with no state matching requirement. Since 1975, however, the funding level for Title XX/Social Services Block Grant (SSBG) has been raised very little, from $2.57 billion in 1976 to $2.7 billion for 1984, 1985 and 1986. Under the block grant, each state designs its own mix of services and determines eligibility requirements. In general, however, states still use SSBG for services to the poor. The exception is protective and emergency services directed at preventing abuse of children or adults, which are provided without regard to income and which include personal assistance. Most of the states still provide home based services of some sort using SSBG monies, but few have developed comprehensive SSBG attendant services programs which encompass personal maintenance, hygiene, mobility and household assistance. California's In-Home Supportive Services system (IHSS), with expenditures of $370 million in FY85-86 and a case load of 111,300, is a notable exception. It is also common for states to combine Medicaid funds for "personal care" with SSBG monies for household assistance either 10 See Appendix A for definitions. 22 in one program or in a service package for an individual who requires both services. The latter arrangement occurs in states with less developed social/health service systems and is the least desirable because the disabled consumer must deal with two different providers and with two different sets of regulations and administrative staffs. Older Americans Act - Title III The most recent social welfare program offering personal assistance services was established under Title III of the Older Americans Act. Title III was designed to either augment existing services or to develop new ones to meet the needs of people over 60 years old. Unlike Medicaid and SSBG programs, there are no income eligibility rules for Title III, though federal regulations encourage local Area Agencies on Aging to target poorer people, as program funds are limited. The program requires that states expend an "adequate proportion" of their allotted funds for a wide variety of services, including personal assistance services such as "personal care", chore, housekeeping, shopping, interpreting and translating, repairs/maintenance/renovations, escort and letter writing or reading, unless the state agencies can demonstrate that such services are already adequately available through some other source. In general, the Area Agencies on Aging supplement Medicaid and Title XX funding for home care services with Title III funds. In addition, states receive separate allotments for home-delivered and congregate meals for older people, services which by themselves may enable a person to remain independent in 23 his or her own home. Although Title III programs have grown since the early 1970's, Title III funds are limited and cannot begin to fill the need for the myriad of services Title III recognizes as necessary to prevent unnecessary and debilitating institutionalization or isolation within the home, including legal services, information and referral and nursing home ombudsmen programs. Given the breadth of Title III services, even a large increase over the existing funding allocation cannot go far. Another difficulty with Title III is that personal assistance services under Title III, where they do exist, are offered solely by Contract and Government agency workers, the least user controlled service delivery systems and the most expensive. However, it is important to note that while Title III seems to provide personal assistance services for very few people at this time, it is a very enlightened policy. Unlike the other funding sources, Title III actually includes services for people with all types of disabilities - physical, mental, intellectual, communication and sensory. Thus readers, interpreters and companions are included in the service package. Medicaid Waivers A major attempt to investigate ways to halt the growth of Medicaid expenditure, the largest proportion of which goes toward institutional and nursing home care of people with intellectual disabilities and older people in particular, was the development of the Medicaid Waiver program in 1979. States can apply for a Waiver of the regular Medicaid rules to deliver a variety of home 24 and community-based services to older people or people with emotional or intellectual disabilities in order to avoid institutionalization. An assumption underlying the waiver programs was that home and community based services are less costly than institutional services. Among the services which are provided by waiver programs are attendant and short-term (respite) services. Under this program states can waive the usual Medicaid requirements with approval of the Health Care Financing Administration (HCFA), including broadening the array of services offered, liberalizing income eligibility for parents of eligible children and providing services only to certain populations. Currently there is considerable tension between the Health Care Financing Administration (HCFA) and the states regarding use of the Waivers. States are using Waiver monies to increase development of noninstitutional services. Theoretically the availability of more community and home health services could cut down on nursing home costs, but the U.S. Government Accounting Office (1982) argues that increased demand could offset any savings. Consequently federal authorities, whose major concern is controlling Medicaid expenditures, have tried to reduce greatly the number of people who can be covered by the waivers. These officials argue that, since the number of people who would ordinarily be in a nursing home is limited to the number of nursing home beds which exist in any particular state (an amount which varies widely), then the number of people on the waiver must be limited to those who quite literally would be admitted to a nursing home if it weren't for the waiver. Since those who 25 aren't admitted because of bed shortages somehow get their needs met in other settings by family and friends, the argument goes, the federal government has no responsibility to maintain these people. 1l In addition, the federal government requires states not to spend on any one individual more than the average cost of what it takes to maintain people in nursing homes, less a certain percentage for room-and-board costs. This last rule discriminated against people with extensive disabilities because the bulk of people in nursing homes are older people with fewer service needs and presumably lower average service costs. Responding to pressure, Congress has now changed this rule so that there is a two-tiered limit - one the average cost of maintaining physically disabled people and the other the average cost of maintaining other nursing home residents (Consolidated Omnibus Budget Reconciliation Act, 1985). In contrast to the federal government's position, state administrators, who face a growing demand for home-delivered services, originally viewed the waivers as the opening of a way to expand Medicaid coverage to very comprehensive home/community based services for all who need it. At this point, unfortunately, the federal government is using its approval authority to deny or impede applications for and renewals of waivers (Association for Retarded Citizens, 1985, pp. 6-7). As a result, 11 Emma Gunterman, Senior Advocate for the California Rural Legal Assistance Foundation, in a private communication (1986) stated that "it is a myth that all of these persons have relatives and friends and, if they have them, that they can give that level of care. Persons who physically qualify for nursing facility care often end up in County Hospitals." 26 comparatively few disabled people are served through the waiver programs. Solely State and Locally Funded Programs The development of Medicaid Waiver Programs coincided with tI the establishment of a number of state-funded, consumer oriented programs, largely as a result of the development of the Independent Living Movement. In the past 20 years there had been a sharp increase in the number of young people with extensive disabilities, people who in earlier periods would most certainly have died of respiratory complications and spinal cord injuries in particular. Increased survival rates occurred because of advances in medical technology made in response to the polio epidemic of the 1950's, World War II, the Korean War and the Vietnam War as well as major progress in intensive care and emergency medical technique in the late 1970's and the 1980's. Once stabilized medically, many of those who survived faced a full lifetime in a nursing home, dependence upon their families until the parents become too old to provide the necessary attendant services, or dependence upon service programs that encouraged dependence and poverty. Those attendant service programs which existed for non- veterans were only available from home health agencies or government workers to those whose income and assets were at or near the poverty level. People with extensive disabilities faced a dilemma. They either had to earn a substantial income in order to pay for a user-directed personal assistant and other disability related expenses out of pocket, or they had to not 27 work at all and receive federal disability income in order to qualify for Medicaid and SSBG services which provided personal assistance according to the hours and plans of the assistant. For many people with disabilities, as for most members of our society, earning a high income is not an achievable goal. And it is even less achievable for people with extensive disabilities who may be able to work only part time or have inadequate education. As a consequence, publicly funded personal assistance services which would allow an individual to live in his or her own home with maximum personal control over how services are delivered combined with the opportunity to work as much as possible became a major goal of the Independent Living Movement. During the late 1970's and early 1980's, a number of states responded to this need by creating personal assistance service programs funded entirely by state and local sources which not only allowed disabled people to hire, train and, if necessary, fire their own assistants but also had realistic cost-sharing formulae allowing people with disabilities to work and still receive a personal assistant subsidy payment. Veterans' Aid and Attendance Allowance In addition to Medicaid, SSBG, Title III and state-funded personal assistance programs, there is also the "Aid and Attendance Allowance" furnished to Veterans in addition to their monthly compensation for disability incurred during active service in the line of duty (Title 38, 1984). Eligible veterans in need of regular aid and attendance received either $906 or $1,350 (if they were at risk of institutionalization) to purchase 28 the service of a personal assistant who is either a family member, hired through an agency or is an individual provider. The individual receiving the higher rate of compensation is considered to need "personal health-care services" which must be provided by a person either licensed to provide these services or supervised by a licensed health care professional. Beyond the various federal and state programs offering part of the constellation of services currently available, another factor shaping the nature of personal assistance service programs in the U.S. is the socio-economic situation of the individual states. Since the eligibility requirements, services delivered and levels of provider reimbursement are determined on the state level for all programs except those for veterans, the level of prosperity in the state and its orientation toward social welfare programs play a major role in determining who has access to personal assistance services. In general, social service programs of all kinds, including personal assistance services, are very sparse in the Southwest and Southeast. Some states have one or two major programs that serve all ages and disability groups, e.g. Illinois and California; others have several programs which target special groups or which must be combined to deliver an entire service package. Much of the survey data presented in the following chapters will serve to expand this discussion by presenting the current state of personal assistance services in the U.S. 29 CHAPTER III PROGRAM GOALS, ADMINISTRATION AND FUNDING There are 173 programs in the U.S. that offer comprehensive or selected personal assistance services on a long-term or short term (respite) basis.As shown in Table 1, 154 (89%) of these were included in the survey results. 12 This chapter gives an overview of the number per state, their year of implementation, the goals of these programs, the state agencies administering the programs, and their funding sources. Goals Virtually all of the programs (96%), according to their administrators, are directed at preventing institutionalization by making it possible to keep people in their own homes or communities. Two-thirds of the administrators state that containing the cost of long term care is also an objective of their programs. Only 16 programs (10%) are aimed at allowing people to work, or emphasize work as a goal, while still providing a personal assistance service subsidy. 12 Three administrators refused to cooperate; three questionnaires arrived too late to be counted, and 13 programs were not included because the State Area Agency on Aging had no overall statewide data on the Title III services in their states. Four programs, the Home Health Agency Programs in Alaska and Massachusetts, and the Chore Program and Homemaker programs in Massachusetts, were interviewed but were subsequently dropped from the survey results because they did not seem to be programs that offered long-term services. There may be others we should not have included, most likely a few of the purely "personal care" programs, but we decided to rely on administrator judgment unless the program was obviously delivering only acute health care and nursing services. Readers should note that, because administrators could not always answer every question, the number of programs responding to a particular question is noted in the tables where appropriate. 30 TABLE 1 NUMBER OF PROGRAMS BY STATE STATE # of Programs # of Programs Alabama Alaska Arizona Arkansas California Colorado Connecticut Delaware Florida Georgia Hawaii Idaho Illinois Indiana Iowa Kansas Kentucky Louisiana Maine Maryland Massachusetts Michigan Minnesota Mississippi Missouri Montana Nebraska Nevada in Sample not in Sample Total # of Programs State in Sample New Hampshire 4 New Jersey 3 New Mexico 5 New York 6 North Carolina 2 North Dakota 1 Ohio 6 Oklahoma 2 Oregon 2 Pennsylvania 3 Rhode Island 4 South Carolina 2 South Dakota 3 Tennessee 1 Texas 4 Utah 3 Vermont 2 Virginia 2 Washington 2 West Virginia 1 Wisconsin 5 Wyoming 1 Dist.of Columbia 2 TOTAL 154 31 # of Programs not in Sample Total a Refusals: Minnesota Waiver Program and North Carolina and Wyoming Title XX Programs b Title III Programs for which state agency on Aging had no state-wide data c Waivers: Questionnaires arrived too late to be included in data set. 32 Number Per State On the average there are three programs per state. The range is from one program each in Arizona, Louisiana, North Dakota and Tennessee, to six each in Massachusetts, Missouri, New York, and Ohio, with the most frequent number of programs per state being two. It is encouraging to note that there is no state without a personal assistance service program of some sort, which means there is a basis upon which to build and demonstrate the extent of need in any particular state. This does not mean, however, that anywhere near all the people who need services are being served. Year of Implementation The programs range in age from 32 years old to less than one year old (Fig. 1). Only four programs were in existence before Titles XVIII (Medicare) and XIX (Medicaid) of the Social Security Act were enacted. The four programs established prior to 1965 were the Connecticut Essential Services Program (1954), the Montana Home Attendant Program (1954), the In-Home Supportive Service Program in California (1959) and Washington, D.C.'s In- Home Support Services Program (1958). After the establishment of Medicaid and Medicare, the number of programs grew slowly. The rate of increase rose after the Title XX (Social Services Block Grant) was enacted in 1974 and remained at a fairly steady rate of increase until the 1980's. Eighty programs (56%) started after 1980, among them the 37 Medicaid Waiver Programs for physically disabled children and adults of all ages authorized as a result of the Omnibus Budget Reconciliation Act of 1981. As noted earlier, the federal 33 government greatly decreased the number of Waiver approvals beginning in 1985, and it is likely that the number of new federal programs being initiated will continue to be sharply reduced unless there is a change in federal policy. Figure 1 NUMBER OF ATTENDANT SERVICE PROGRAMS IMPLEMENTED BY YEAR (n=145) a One waiver program administrator did not know the date the program was irmlemented. One waiver program was established in 1970 and received a waiver in 1981. It is included among the five programs established in 1970. Waiver programs exclusively for people with mental and intellectual disabilities are not included. 35 Administering Agencies The bulk of programs (45%) are administered by the state level agencies (often called Departments of Social Services, Human Resources or Public Welfare) which have jurisdiction over social, health and welfare programs. As can be seen in Figure 2, 27% of the programs are administered by the State Agencies on Aging directly; 17% are administered by either medical assistance or health departments. State vocational rehabilitation agencies administer only 7% of the programs using funds from state sources, not federal vocational rehabilitation allocations. An unexpected finding is that the personal assistance services programs in Maine, Nevada, North Carolina, and South Dakota are administered directly by an Independent Living Program. Figure2 TYPES OF ADMINISTERING AGENCIES (n=147) General Social Service Departments State Agencies on Aging Medical Assistance Vocational Rehabilitation llealth Departments Independent Living Programs Other 1020304050 Percent 37 Funding Sources More than a third of the programs rely on Medicaid funds, including expenditures under Medicaid Waivers granted by the Health Care Financing Administration of the U.S. Department of Health and Human Services (Table 2). As explained above, state Medicaid programs combine federal, state and (in some states) local funds. Somewhat less than a quarter of the personal assistance programs are funded by Social Services Block Grants, Title XX of the Social Security Act. Twenty-two percent of the programs are funded entirely from state or local sources. Allocations from Title III of the Older Americans Act are the sole federal funding source for 10% of the personal assistance programs. Only 12 programs (8%) function on a combination of federal funding sources. The respondent for one program administered by an Independent Living Program reported that funds from Title VIIB of the Rehabilitation Act were used when the personal assistance program was first established, which was the year included in the survey. 38 TABLE 2 PERCENTAGE OF PERSONAL ASSISTANCE PROGRAMS FUNDED BY VARIOUS SOURCES (n=141) Programs Funding Source Numbera Percent Title XIX: 51 36% Title XX (SSBG) 32 22% State/Local 30 22% Title III 15 10% Mixed Federal: Titles XIX & XX 6 4% Titles XIX, XX & III 2 1% Titles XX & III 3 2% Titles XIX & III 1 .6% Title VIIB 1 .6% a There were 13 program administrators who were unable to specify the source of funding. 39 CHAPTER IV PROGRAM STRUCTURE This chapter provides a broad overview of the structure of the programs surveyed, including eligibility criteria, types and extent of services available, who actually provides the services, and who evaluates the user to determine service need. No attempt was made to judge the quality of the services provided. Eligibility Programs determine eligibility based on a large number of factors including age, employment status, disability type, and degree of poverty. Age Range Most of the programs (88%) will serve people over 60 or 65 years old. Somewhat fewer (72%) serve adults between the ages of 18 and 64. Less than half (45%) serve children. Although some administrators questioned whether programs can successfully serve people of all ages given their different needs, many programs do just that. Currently 41% of the programs serve people of all ages while 26% combine adults of all ages or children with adults under age 65 (Table 3). 40 TABLE 3 AGE RANGES ELIGIBLE BY PROGRAMS (n=153) Programs Age Range Number Percent All ages 62 42% 18 and above 38 24% 65 and above 36 23% 18 - 64 9 6% Less than 18 6 4% Less than 65 2 1% Disability Groups Served In terms of disability groups served, 58% of the program administrators say they serve people with all types of disabilities, physical (including those with brain injuries), intellectual and emotional. 26% of the programs serve only people with physical disabilities and those with brain injuries; and another 10% serve only those with physical disabilities (Table 4). The fact that so many programs accept people with emotional and intellectual as well as physical disabilities calls into question the hypothesis that the service system for people with these disabilities tends to be quite separate. It also raises the question of whether separate personal assistance programs for people with emotional and intellectual disabilities with costly separate administrations are really necessary. It would be most interesting to explore the additional personal assistance service programs administered through State Departments of Developmental Disabilities and Mental Health to determine how many of them there are and how they differ from the programs in this survey. 41 TABLE 4 DISABILITIES OF INDIVIDUALS ELIGIBLE TO BE SERVED(n=136) Programs DisabilityNumber Percent • Physical Disability, Brain Injury, Intellectual Disability, Emotional Disability 80 59% Physical Disability, Brain Injury 35 26% Physical Disability 14 10% Physical Disability, Brain Injury, Emotional Disability 5 4% Physical Disability, Brain Injury, Intellectual Disability 2 2% Employment Status As noted earlier, only 16 out of the 154 programs interviewed encourage people to work (Table 5). In fact, six of these require an individual to be employed in order to be accepted for the program, and 4 of these programs require, in addition, that people be employed a minimum of 20 hours per week. 42 TABLE 5 PROGRAMS HAVING THE GOAL OF ENCOURAGING PEOPLE TO WORKa Name Massachusetts Personal Care Program Connecticut Personal Care Assistance Program Maine (Attendant Program for Employed People) Washington State Chore Services Pennsylvania Attendant Care Demonstration Nebraska Disabled Persons & Family Support Program Nevada Attendant Care Program Mississippi Independent Living Attendant Care Pilot Program Alaska General Relief Medical Exception Programb Maryland Attendant Care Program Massachusetts Medical Assistance Program (for Hearing Impaired) North Carolina Attendant Care Program Ohio Personal Care Assistance Program South Dakota Attendant Care Program Utah Personal Attendant Care Programb Vermont Personal Services Program aTwo other program administrators said their program had work as a goal but one served only SSI eligibles and the other was a Title III program. bProgram no longer exists Income Most of the programs not only do not encourage people to work, they require people to be poor (Figure 3). In 1985, the poverty level for a single person was $5,250 (US Department of Health and Human Services, 1985).Only 23% (35) of the 154 programs surveyed accepted people with incomes above $10,500, twice the poverty level. Half (77) of the programs either had specific limits of $5,250 or less, or limited eligibility to recipients of entitlement programs (such as Supplemental Security Income, Medicaid, or Social Security Disability Insurance) whose 44 own income eligibility limits are near or below the poverty leve1. 13 Though there is no definitive study of the extra costs disabled people have to bear because of their disabilities, such as equipment replacement and repair, housing and clothing adaptation, medical insurance (if they can get it), and transportation, it is safe to assume that people with extensive disabilities earning less than $25,000 a year could not easily cover those expenses and the cost of an attendant for 20 or more hours a week. Only 56 programs (36%) had a oraduated shared cost formula, i.e., a system by which disabled individuals pay more and more of the cost of their personal assistant based on income up to a certain ceiling. The most adequate of these exclude disability- related expenses from income or have an income ceiling over $20,000 per year (e.g. programs in Maryland, Pennsylvania, Ohio, South Dakota and Vermont. ) Without such a system, the most severely disabled with high disability costs would have to earn very high incomes in order to afford an attendant, apartment, transportation, medical bills and the like on their own. Other Eligibility Criteria In addition to age, disability type, employment status and income level, the programs surveyed had a wide variety of other eligibility requirements which are listed below in Table 6. The two most common were being at risk of institutionalization (57%) and physician's orders (42%). There were some programs that only admitted people who lived in certain counties or cities within a 13 See Methodology, Appendix B, for operational definitions. 45 state. Some of these were Medicaid Waiver or demonstration projects, but others, like the programs in Nevada which are locally funded and administered and are limited geographically to the two urban areas around Reno and Las Vegas, are permanent programs. Most unusual were programs that only accept people with very narrowly specified disabilities, eg. traumatic spinal cord injuries, or a certain level of functions, eg. wheelchair user or inability to use a certain number of limbs. Some programs which only use individual providers supervised by the recipient require recipients to be able to manage their own attendants. TABLE 6 PARTIAL LIST OF ELIGIBILITY REQUIREMENTS(n=154) Programs Requirement Number Percent Risk of Institutionalization 89 57% Physician's Orders 65 42% Family Unable/Unwilling to provide Attendant Services 34 22% Severe Disability 26 17% Resident in Certain Geographic Area 25 16% Able to Manage Own Attendant 21 13% Inability to use certain number of limbs a 11 7% Currently a Nursing Home Resident 7 5% Wheelchair User 5 3% Member of Specific Disability Group 5 3% Living Alone 5 3% a two limbs (n=4); three limbs (n=3); four limbs (n=4) 46 Services The survey (See Appendix C) divided the possible services into personal, domestic and related services. Personal services are those which involve bodily contact. As one can see in Figure 4, there are a certain core of services - such as dressing, bathing, oral hygiene and grooming - that were offered by almost every program in the sample. Even programs that offer mainly "homemaker" and "chore" services tend to offer dressing, limited hygiene and feeding. Far fewer programs allow assistants to help with catheter management or to administer injections and medications. Domestic services are as important to an attendant program as personal services. Domestic services involve tasks necessary to maintain one's home. As can be seen in Figure 5, most programs offered meal preparation, light cleaning, meal clean-up, laundry and shopping. Less frequently available are the heavier and more infrequent tasks which are also an important part of maintaining one's home. In addition to personal and domestic services, there are a number of related services that are often necessary to sustaining a disabled individual at home on a long term basis. Figure 6 lists the percentage of programs offering some of these additional services. Transportation offered by these programs is most often for medically related outings. Escort is sometimes available for general shopping as well. However, consumers who manage their own assistants can use them for a wider variety of trips. Dressing Bathing Oral Hygiene and Grooming Feeding Transfers Ambulation Skin Maintenance Bowl and Bladder Assistance Prosthesis Assistance and Range of Motion Medications Menstnial Assistance Respiration Catheter Assistance Injections Figure 4 PERCENTAGE OF PROGRAMS OFFERING VARIOUS TYPES OF PERSONAL MAINTENANCE/HYGIENE SERVICES (n=154) Meal Preparation Light Cleaning Meal Clean-up/ Menus Laundry Shopping Chores I Leavy Cleaning Repairs/ Maintenance Figure 5 PERCENTAGE OF PROGRAMS OFFERING VARIOUS TYPES OF HOUSEHOLD ASSISTANCE SERVICES (n=154) Transportation Case Management Escort Respite Teaching and Demonstration Protective Supervision Home Delivered Meals Telephone Reassurance Readers Interpreters • Figure 6 PERCENTAGE OF PROGRAMS OFFERING VARIOUS TYPES OF RELATED SERVICES (n=154) 50 1 It was heartening to learn that more than half the programs in the country included some sort of short-term (respite) services. Respondents did not specify the extent of these services, so it is not possible to say how many only offered services for a few hours at a time rather than for 24 hours a day for a week or more. Very few programs offered readers for those with visual disabilities or interpreters for people with hearing or speech disabilities. Few realize the major expense these services can be for disabled people nor how important they are to fostering independence and ability to work and participate in one's community. In addition, there are a number of services and aspects of service delivery which merit further study. First is the issue of child care. Currently, California is attempting to prohibit people with disabilities from using their assistants to care for children. As more and more people with disabilities choose to have children, this issue should become very controversial. Second are emergency services, which are essential to people living on their own. Back-ups are needed if an assistant cannot work. Some ILP's maintain pools of people available for emergencies, but this service needs to be widely available. Other services not covered in the survey are adult day services, transportation programs not associated with personal assistance service programs, and cognitive services for people with intellectual disabilities. We also did not inquire about the degree of geographic mobility that programs allow. Can personal assistants accompany the consumer to work, out-of-town/ 51 to recreational activities, and so on? Obviously the more control a consumer has over the assistant's duties, the more such outings can occur. However, limits on the amount of service allowed will circumscribe the extent to which a consumer can utilize an assistant for long periods away from the home. The availability of personal assistance services outside the home is a major factor in the integration of people with extensive disabilities into society. In order to get a clearer picture of the configuration of services offered by personal assistance programs across the U.S., a core of services was judged to define a certain type of service. The core of personal services is feeding, bathing, dressing, bowel and bladder care, oral hygiene and grooming, and transfers. It seemed to the WID staff that these services are the basic minimum of personal services. In addition, it is our opinion that programs need to provide catheter management in order adequately to serve disabled people. The core of domestic services is light cleaning, laundry, shopping, and meal preparation and clean-up. The combination of these domestic and personal services we consider to be a basic attendant service program. As shown in Table 7, 90 programs (58%) provide both personal and domestic services, but 39 of these otherwise comprehensive programs do not offer catheterization and thus cannot meet the needs of those disabled people who need this service. Twelve percent of the programs only provide personal services and 25% offer domestic services only. In some states, the only way disabled individuals can get the range of attendant services they 52 need is by arranging services through separate programs. Eight programs (5%) provide short-term services (respite) only. In Wisconsin, for example, there is one program, the Respite Care Project, that provides short-term personal assistance for people of all ages all over the state. TABLE 7 NUMBER AND TYPES OF PROGRAMS IN SAMPLE (n=154) Program Program Type Number Percent Attendant with Catheterizationa 51 33% Attendant without Catheterization 39 25% Personal Service Only with Catheterizationb 11 7% Personal Service Only without Catheterization 7 5% Domestic Services Onlyb 39 25% Short-Term (Respite) Onlyd 8 5% aAttendant = Personal Service b + Domestic Servicesb bPersonal Service = Feeding, Bathing, Dressing, Bowel/ Bladder Care, Transfers, Oral Hygiene and Grooming CDomestic Services = Light Cleaning, Laundry, Shopping, Meal Preparation and Clean-Up dRespite = Provision of relief for usual service provider (family, attendant, friends) for periods from 1 hour to a number of days or weeks Hours Services Available A program may offer a very wide range of services that meet the assistance requirements of people with even the most severe disabilities, but if the disabled recipient cannot receive those services when they are needed, the program is inadequate. 53 Program rules often require that providers be employees of home health agencies. Often these agencies provide services only from 9-5, Monday through Friday. This is a fine schedule from the point of view of an employee, but from the point of view of disabled consumers it is almost totally inadequate. The periods of greatest personal assistance need are when one gets up in the morning (in time to get to work or other activities) and when one goes to bed at night (after one has had an evening of recreation or other activities). More domestic services do, of course, fit into a 9-5 weekday schedule. It is not unheard of for attendant service users to be forced to go to bed at 5 p.m. because attendants do not work after that time. Only 65% of the programs make personal assistance services available 24 hours a day (Table 8). If one adds to this those programs that offer services less than 24 hours ,; day (but more than 9-5), then 76% of the programs potentially offer services at the necessary times. However, this finding must be viewed cautiously because often programs weren't strictly 9-5 operations but the hours were only somewhat broader, eg. 8:00 - 7:30. In addition, many administrators did not know the hours of service in every section of the state and tended to give an answer describing the general trend. In many states, however, the hours are determined by the contract agency and, in less populous areas, where home care agencies have no competition, the tendency is to restrict hours of service. 54 TABLE 8 HOURS SERVICE AVAILABLE (n=152) Programs Hours Number Percent 24 hours/day 101 65% Less than 24 hours/day (but not strictly 9-5) 32 21% Strictly 9-5 19 12% TABLE 9 DAYS SERVICE AVAILABLE (n=153) Programs Days Number Percent Every day 120 77% Less than every day, more than only weekdays 9 6% Weekdays only 24 16% TABLE 10 HOURS AND DAYS OF SERVICE AVAILABILITY (n=143) Programs Hours and Days Number Percent 7 days/week, 24 hours/day 101 66% 7 days/week, but less than 24 hours/day 18 12% Less than 7 days/week, and less than 24 hours/day 24 16% 55 Fully 77% of the programs offer service every day (Table 9). If one combines hours and days of service, 66% of the programs have service available every hour of every day (Table 10). An additional 12% have services available every day on more than a 9-5 basis. Maximum Service Amounts Allowed There are two ways in which programs expressed the maximum service amounts allowed, either in hours or in terms of a maximum financial allowance.Fifty-four programs expressed the limit in monetary terms which ranged from $60 a month to $1,752. Fifty percent of these programs had allowances of less than $838, fifty percent had limits above that. An additional 44 programs set no maximum monthly allowance, either in terms of hours or money. There were 38 programs that give the maximum allowance in terms of hours. The hours ranged from 3 to 67 per week, with an average of 29 hours. In order to clarify the impact of the maximum allowance on the consumer, the monthly monetary allowance was divided by the average hourly wage for all types of attendants, $4.41, and further divided by 4 to get a weekly figure. 14 As Figure 7 shows, 18% of the programs have limits of "20 hours a week or less, and therefore may not serve the needs of an individual with a severe disability. 14 This figure tends to inflate the number of programs which provide more than 20 hours/week because the programs with the highest financial allowances generally allow for home health aide service provision. The average cost to the program for home health aides is almost twice the $4.41/hour average. See next section for more detail on provider wages. Figure 7 MAXIMUM NUMBER OF SERVICE HOURS ALLOWED PER WEEK (n=136) 57 Direct Service Providers The attendants could be divided into three groups, those who were individual providers (IPs), those who worked for contract agencies, and those who worked for county or municipal governments. The bulk of the programs (76%) utilized attendants provided by contract agencies. Fifty percent of the programs used individual providers and only 28% used government employees (Table 11). Many programs use more than one type of provider (Table 12). There are advantages and disadvantages to each type of provider. Consequently a program that offers service to a wide variety of people needs to provide a choice between individual providers and more agency trained and supervised contract or government workers. TABLE 11 TYPES OF PROVIDERS UTILIZED BY PROGRAMS Programs Number Percent Contract Agencies 118 76% Individual Providers (IPs) 77 50% Local Government Unit Staff 44 28% TYPe TABLE 12 PROVIDER TYPE MIX (n=154) Programs Type of Provider Number Percent Contract Agencies Only 54 35% Individual Providers Only 33 21% IPs and Contract Agencies 24 16% IPs, Contract & Govt Staff 20 13% Contract Agencies & Govt Staff 20 13% Government Staff Only 3 2% 58 Individual Providers Individual providers (IPs) are the preferred mode of service delivery for those who emphasize independent living and are able to manage their own personal assistants. Consumers have a far greater level of control of IPs. Sixty-two percent of the 77 programs utilizing IPs allow the consumer to train his or her own attendant, 74% allow the consumer to hire and fire their attendants, and a much smaller 40% allow direct payment to the disabled consumer who then pays his or her attendant. Consumer control is a controversial issue because it raises the question of who is the employer, the governmental agency or the disabled individual. Many state administrators are concerned about the liability issue and the level of attendant training. Some are calling for certification of all attendants after completion of a formal training program. Consumers tend to oppose formal training and certification requirements because trained attendants often resist taking directions from the disabled client and - subtly or not so subtly - undermine independence. Only 64% of the programs using IPs require the disabled consumer to train the attendant (Table 13). In the survey we did not inquire whether programs required IPs to be licensed or certified in some way. While this seems to be an issue of growing concern, one should bear in mind that in the entire 27-year history of the California IHSS no one has ever sued the state for negligence related to an independent provider.15 15 See Zukas, H. (1986) for a fuller discussion of the liability issue. 59 TABLE 13 LEVEL OF TRAINING REQUIRED FOR INDIVIDUAL PROVIDERS(n=77) Programs Type of TrainingNumber Percent Trained by Client/Consumer 48 62% Graduate of Agency Training Program 12 16% Home Health Aide 5 6% Licensed Practical Nurse 4 5% Other 22 29% Fifty-five out of 77 administrators questioned replied that their programs had regulations regarding IPs. In general the regulations were very minimal. They required such things as the individual must receive some sort of formal training (n=22) and/or be over 18 years old (n=27); others said that the regulations specify that the consumer must be able to supervise the attendant. Twenty-six percent of the programs said the only requirement is that the consumer request an individual provider. After that, the consumer is responsible for setting all limits. Another controversial issue pertaining to individual providers is whether or not to allow relatives to be paid to be independent providers. Of the 77 programs that allow for IPs, 41 permit relatives to be paid providers under some circumstances. Table 14 lists the requirements regarding relatives that were mentioned by more than one administrator. Some programs seem to be somewhat flexible, depending on the situation. For example, relatives may be paid if the disabled individual needs specialized services that only family will or can provide or if the disabled individual lives in a remote area where no one is 60 available. Most of the other programs which have regulations regarding relatives seem to have guidelines based more on which relatives they think should be expected to provide services without pay and which should not - a rather arbitrary exercise as can be seen by the variety of different guidelines listed. TABLE 14 CIRCUMSTANCES IN WHICH PROGRAMS ALLOW RELATIVES TO BE PAID ATTENDANTS (n=41) Reason Number Percent No one else is capable or available 13 31% The relative is not legally responsible 10 24% for the disabled individual Relative is prevented from working outside 9 22% the home because no other attendant is available Relative does not reside in the same house 7 17% Relative is not the spouse 7 17% Any relative is okay 6 15% No spouse, parent, child 4 10% or son/daughter-in-law Niece, nephew, cousin okay 2 5% No blood relatives or spouses 2 5% Contract Agency Attendants There are 118 programs which contract with outside agencies to provide personal assistants for their clients. Almost all of these programs contract with certified Home Health Agencies (n=102) and some (n=58) contracted with local government units also. Eighty-seven percent contracted with non-profit agencies 61 and 68% also contracted with for-profit agencies. (-1 The average hourly reimbursement rate to the contract agencies was $8.32/hour with a range from a low of $3.50/hour to a high of $19.00/hour. Included in this range are wages for home health aides, chore workers and housekeepers. Every attempt was made not to exclude from these figures the reimbursement for allied health personnel such as registered nurses and the various types of therapists. The average hourly pay to the contract agency workers was $4.71/hour with a range from $3.00/hour to $10.00/hour. The average hourly difference between the reimbursement rate and the attendant's wages was $4.08 (range of 0-$14.38). This means that for those programs for which this information was available (n=52 or 44%), for every hour the attendant goes out, the contract agencies receive on the average $4.08 - almost a 100% mark-up. Government Agency Attendants Only 44 programs use attendants who are direct employees of the state or of local government units. One suspects that the number will further decline because current federal government policy greatly encourages private enterprise taking over service functions of government at all levels. Government workers earn, on the average, $4.77. Comparison of Provider Types In order to understand better the advantages and dis advantages of the types of providers, it is instructive to compare them on two dimensions, degree of consumer control allowed and attendant wages and benefits. Government workers 62 receive not only the highest wages but vastly more benefits, almost 5 apiece (Table 15). Wages for Contract Agency Workers were only slightly lower, on the average, but their benefit package is decidedly inferior. On the average, contract agency attendants get about 2 fringe benefits and they are most often social security and worker's compensation. Individual providers receive the lowest pay, very close to minimum wage, and very few, if any, benefits.16 TABLE 15 NUMBER OF BENEFITS AND AVERAGE HOURLY WAGE BY PROVIDER TYPEa Benefits Average Hourly Average Benefits Provider Type Wage Number Rangea Mode Government Workers $4.77 4.7 0-7 7 (n=30) Contract Agency Workers $4.71 1.7 0-7 0 (n=62) Individual Providers $3.74 .7 0-3 0 (n=60) aIncludes 1) vacation pay, 2) sick leave, 3) health insurance, 4) worker's compensation, 5) Social Security, 6) unemployment compensation and 7) transportation costs. 16 The accuracy of these data is somewhat suspect because administrators tend not to be the people who know this information in detail. Even though they received questionnaires in advance, many did not take the time to check with people in their agencies who could accurately answer the wage/benefit questions. Nevertheless, we are confident results reflect the general trend. Government workers would be expected to receive the highest wages and benefits and individual providers would definitely receive the lowest. 63 In terms of consumer control, there are advantages and disadvantages to each type of provider depending on the user's circumstances. The degree of consumer control over the attendant is a major concern for the Independent Living Movement. Without control, the consumer is dependent upon the schedule, desires and agenda of the attendant - hardly a situation which fosters independence. Programs using IPs allow for the most consumer control (Table 16). Consequently, individual providers are a major attraction for independent living adherents. However, users of IPs must have the ability to manage their own attendants. Another drawback is that IP's tend to be paid at or very close to the minimum wage, receive very few, if any, benefits, and/ as a consequence, have a very high turnover rate. TABLE 16 NUMBER OF PROGRAMS ALLOWING CONSUMERS TO TRAIN, PAY, AND HIRE AND FIRE ATTENDANTS Type of Provider Train Hire/Fire Pay Individual Providers (n=77) 48 62% 57 74% 31 40% Contract Agencies (n=118) 15 13% 5 4% 1 1% Government Workers (n=44) 4 9% 4 9% 0 0% Contract agency workers such as home health aides and homemakers tend to be paid somewhat better because they are trained by the agency or other training programs. Trained attendants are appropriate for disabled clients who are unable to manage totally their personal assistant. However, a client's independence can be undermined by a contract worker who takes too 64 much responsibility for what, when, where and how services get provided. Government employees, who tend to be utilized only when no private contract agency exists in an area, have the highest pay and benefits, but often they also discourage independence in the people they serve. There are a number of important issues pertaining to who is the personal assistance service provider and the conditions of employment which need to be noted here. We did not inquire about unionization, but it is our impression that there are few unionized attendants in the U.S., except perhaps those who work for local or state governments. 17 Unionization would improve the working conditions and benefits for attendants. This project did not explore the extent to which disabled people rely on unpaid providers such as family members and friends. That issue must wait for a consumer survey. Determination of Services Allowed We inquired as to who makes the decisions regarding types of services and hours that a consumer can receive from a program and the basis upon which those decisions are made. Functional ability and services needed are the primary indicators used for evaluating the client (Table 17). 17 In personal Communication with Kirk Adams, Senior International Organizer, Service Employees International Union, July 21, 1986, we learned that SEIU has organized 2,000 homemakers in Boston (out of a total of 15,000 in Massachusetts, 2,000 in Chicago, 500 in San Francisco and 20,000 state workers in New York City. 65 TABLE 17 BASIS FIR SERVICE EVALUATION Program Criteria Number Percent Services Needed 136 90% Functional Ability 119 77% Physician's Recommendation 83 53% Accessibility of Environment 76 49% Cost of Services Less Than Institutional Care 68 44% Nursing Home Eligibility 31 20% Service professionals, especially case managers, were found to be the primary decision makers as to hours and types of service to be provided. Users do not have much voice in these decisions (Table 18). TABLE 18 THOSE WHO DECIDE ON TYPES OF SERVICE & HOURS (n=154) Program Decision Makers Number Percent Case Manager 46 30% Case Manager & Social Worker 15 10% Program Director 18 12% Social Worker 10 7% User 9 6% Registered Nurse with/ without Other Professional 8 5% Contract Agency with/ without Case Manager 8 5% Medical Assistance 6 5% Independent Living Program 5 3% Registered Nurse or Doctor 5 3% User & ILP or Social Worker 2 1% Other 22 14% 66 Medical Supervision Nearly a quarter of the programs (n=37) require medical supervision by an R.N. or other health professional for all the program's services. A third of the programs (n=51) require medical supervision for some of the services, usually the more medically oriented ones, and 40% (n=61) of the programs require no medical supervision. Of those programs requiring supervision for some or all of the services, 34 (39%) require monthly supervision, 15 (17%) require bi-monthly supervision, 9 (10%) require quarterly supervision, and 12 (14%) require supervision from between every six months to once a year. In this and the previous chapter we have taken a largely descriptive approach, breaking attendant services programs down into common structural and programmatic components and describing in turn how each of these components is addressed across the country. We will now shift our perspective and consider individual programs in their entirety in order to ascertain the degree to which they promote independent living. 67 CHAPTER V PROGRAM CONFORMITY TO THE INDEPENDENT LIVING MODEL DeJong and Wenker (1979), in their seminal work on personal assistance services, described the attendant programs in this country as lying on a continuum defined by the medical model on one end and the Independent Living Model on the other. The Medical Model can be seen most purely in programs aimed at serving people with acute conditions which require short term "care". In these programs a physician's plan of treatment is required along with periodic nursing supervision. Attendants are recruited, trained and supervised by the contract agency. The attendant is ultimately accountable to the physician and the recipient essentially plays the role of patient. Programs directed at people with short term "care" needs were not included in the WID survey. We did, however, include programs that served people with chronic conditions on a long term basis that operated very much on the terms described above. The other end of the continuum DeJong describes is the Independent Living Model in which the attendant is managed by the user. No medical supervision is required. Attendants are recruited by the user, paid by the user and accountable to the user. In order to see where the programs surveyed fit on the continuum, we gave each program a score from zero to ten based on a count of how many of the following ten characteristics of the pure Independent Living Model the program incorporated. These characteristics are: 68 1. No medical supervision is required; 2. The service provided is attendant service with catheterization, I.e. services offered include personal maintenance and hygiene, mobility and household assistance. 3. The maximum service limit exceeds 20 hours per week; 4. Service is available 24 hours a day, seven days a week; 5. The income limit is greater than 150% of the poverty levell8; 6. Individual Providers can be utilized by the consumer; 7. The consumer hires and fires the attendant; 8. The consumer pays the attendant; 9. The consumer trains the attendant. 10. The consumer participates in deciding on the number of hours and type of service he or she requires. The bulk of the programs scored low on the degree of Independent Living orientation (Figure 8). However, as one might expect, the programs are indeed spread across the continuum. And there are in fact a few programs that do conform to the pure independent living type. 18 Actually setting the limit at more than 150% of the poverty level ($7,875) is generous. An income of $7,875 is very low to enable a single person to meet food, shelter, transportation and clothing costs and still be able to pay an attendant. Figure 8 DEGREE TO WHICH PROGRAMS CONFORM TO INDEPENDENT LIVING MODEL (n=147) 70 The programs that scored 0, 1, 2, or 3, the lowest independent living scores, served 385,445 clients or 49% of all those being served (Table 19). Fewer clients (210,436 or 27%) were served in the most independent living-type programs which scored 7, 8, 9, or 10 on the independent living scale.19 And somewhat fewer (192,751 or 24%) were served by programs scoring in the middle range. TABLE 19 NUMBER OF USERS SERVED BY ATTENDANT SERVICE PROGRAMS AT VARIOUS LEVELS OF CONFORMITY TO THE INDEPENDENT LIVING MODELa (n=127) Independent Total Number Number of Programs Livina Score of User Reporting Low 0 47,487 3 1 87,719 11 2 143,811 28 3 106,428 19 4 74,132 14 5 64,195 9 6 54,424 15 7 172,984 14 8 25,837 5 9 11,065 8 High 10 550 1 aDoes not include programs that only provide respite 19 Note that California's IHSS program, which served 106,138 people in FY1984, is included among the programs scoring "7" on the Independent Living Model. The 550 users in the program with the highest score represent a projection, not the precise number served. 71 There seems to be a marked tendency for the expenditure per client to increase (but not necessarily per hour) as the programs become more consumer or independent living oriented (Table 20). This finding needs further exploration, however. It is quite likely that the more consumer oriented programs serve the most severely disabled people. Also, by definition, the independent living model programs provide the greatest number of hours of service because programs got an extra point for offering 20 or more hours of service per week on the independent living score.2° Finally, the programs with the lowest independent living score are most likely to be those offering household assistance only. TABLE 20 EXPENDITURE PER USER BY PROGRAMS AT VARIOUS LEVELS OF CONFORMITY TO THE INDEPENDENT LIVING MODEL (n=119) Independent Living Score Expenditure per User Number of Programs Reporting Low 0 $ 811 3 1 570 11 2 2,853 28 3 1,916 16 4 3,922 12 5 4,622 9 6 2,441 13 7 3,729 13 8 2,403 5 9 3,079 8 High 10 7,636 1 20 Cost per hour of service would have been a more desirable measure for comparison since it would have eliminated the need to take account of these variab]es. However, not enough programs were able to provide these figures for the current survey. 72 Figures 9, 10, 11 and 12 provide some evidence to support this explanation. The Social Services Block Grant and Medicaid- funded programs tend to have the lowest independent living or consumer orientation, whereas the state-funded programs have the highest. Small states are more likely to have independent living- oriented programs than are large states (Table 21). Half of the states have programs that score 7 or better on the independent living orientation scale. These programs, their independent living model scores and the states where they are located are detailed in Table 22. 73 Figure 9 DEGREE TO WHICH TITLE XIX FUNDED PROGRAMS CONFORM TO INDEPENDENT LIVING MODEL (n=48) 27% 3 4 5 6 7 10 Low Independent Living Score High Figure 10 DEGREE TO WHICH TITLE III FUNDED PROGRAMS CONFORM TO INDEPENDENT LIVING MODEL (n=11) 40 35 30 25 20 15 10 3 4 5 6 7 10 LowIndependent Living ScoreHigh 74 Figure 11 DEGREE TO WHICH SSBG FUNDED PROGRAMS CONFORM TO INDEPENDENT LIVING MODEL (n=29) 40 35% 35 30 15 10 5 3 4 5 6 7 Low Independent Living Score Figure 12 DEGREE TO WHICH TOTALLY STATE AND/OR LOCALLY FUNDED PROGRAMS CONFORM TO INDEPENDENT LIVING MODEL (n=16) 75 TABLE 21 DEGREE OF CONFORMITY TO INDEPENDENT LIVING MODEL BY STATE (n=147) Number of Programs by Degree of Conformity to Independent Living Model Low High STATE 0 12 34567 8 9 10 Alabama 1 1 1 Alaska 1 2 Arizona 1 Arkansas 1 1 California 1 1 1 1 Colorado 1 Connecticut 1 1 1 Delaware 2 Florida 311 Georgia 1 Hawaii 11 1 Idaho 11 1 Illinois 2 Indiana 31 Iowa1 1 Kansas 11 1 1 Kentucky 1 1 1 Louisiana Maine 1 112 Maryland 1 1 1 Massachusetts 2 1 2 Michigan 1 1 1 Minnesota' 1 Mississippi 1 Missouri 2 1 2 1 Montana 1 1 1 Nebraska 1 1 1 Nevada 12 1 76 Number of Programs by Degree of Conformity to Independent Living Model Low High STATE 012345678910 New Hampshire 1 2 1 New Jersey 3 New Mexico 1 2 1 1 New York 1 1 2 North Carolina 1 1 North Dakota 1 Ohio 1111 1 Oklahoma 2 Oregon 1 1 Pennsylvania 1 1 1 Rhode Island 2 1 1 South Carolina 2 South Dakota 1 1 1 Tennessee 1 Texas 12 1 Utah 11 1 Vermont 1 1 Virginia 2 Washington 1 1 West Virginia 1 Wisconsin 1 1 1 2 Wyoming 1 Dist.of Columbia 1 1 77 TABLE 22 PROGRAMS WITH THE HIGHEST INDEPENDENT LIVING ORIENTATION Rating State 10 Pennsylvania 9 Maine Maine Missouri Nevada Ohio South Dakota Utah Vermont Washington 8 Kentucky Maine Maryland Michigan Mississippi Nebraska New Hampshire Pennsylvania South Dakota 7 Alabama Arkansas California Connecticut Connecticut Illinois Illinois Maine Massachusetts Massachusetts North Carolina Oregon Wisconsin Wisconsin Program Name Attendant Care Demonstration Home and Community-Based Waiver Homebased Care Program Personal Care Assistance Program Attendant Care Program Personal Care Assistance Program Attendant Care Program Personal Attendant Care Participant Directed Attendant Care Chore Services Personal Care Attendant Program Attendants for Employed People Attendant Care Program Home Help Independent Living Attendant Care Pilot Program Disabled Persons/Family Support Adult Services Attendant Care Services for Older Adults Attendant Care Optional Supplement of SSI Spinal Cord Commission In-Home Supportive Services Program Essential Services Program Personal Care Assistance Program Community Care Program Home Services Program Attendants for Unemployed People Independent Living Personal Care Personal Care Program Attendant Care In-Home Services/ Project Independence Supportive Homecare Program Family Support Program 78 CHAPTER VI PROGRAM UTILIZATION AND EXPENDITURES The previous three chapters have described the structure of the attendant service programs in the United States as well as their development, administration, funding sources and degree of conformity to the Independent Living model. These chapters were intended to present the rules, regulations and requirements of these programs. In this chapter we propose to carry the process one step further and discuss who actually gets service from these programs and how much it costs programs to provide that service. Service Utilization The data in this survey indicate that approximately 850,000 people in the U.S. received publicly-funded attendant services through 135 programs. 21 The state with the greatest number of attendant service consumers in FY1984 was California, with 150,805 people (or 0.64% of the state's population) (Table 23) (U.S. Bureau of the Census, 1986). New York had the second largest number of attendant service users, 124,808 people (0.71% of New York's population). The proportion of the population receiving attendant services in any given state ranged from 0.01% to 0.87%. The total number of users represents 0.36% of the population of the United States. If the users in only three states, New York, California and Massachusetts, are excluded, 21 This figure is an estimate because: a) 16 programs could not report their caseload, b) there are an additional 19 programs we could not interview, c) 9 programs were eliminated from client and expenditure figures because the administrator could not break out those who received attendant services from those who got home-delivered meals, transportation and medical services. Figures from two programs received late were added into the data reported in this chapter. 79 this figure drops to 0.22%. Administrators of 44 programs estimated that at least 46,472 people in their states left or were kept out of institutions as a result of their programs. Twenty-two administrators estimated that 8,383 additional people could leave institutions if their programs were expanded. Both these figures would be much higher if comparable statistics from the other personal assistance program administrators were available. This issue deserves further research. 80 TABLE 23 COMPARISON ACROSS STATES OF EXPENDITURES AND TOTAL CLIENTS OF ATTENDANT SERVICE PROGRAMSa Total Number Percentage of 1985 Total of Attendant State Population Expenditures State Service Clients Estimate (in thousands) (n=135) (n=140) Alabama 24,016 .62% $ 17,723 Alaskab, d 1,193 .30% 2,200 Arizona 1,500 .06% 1,696 Arkansas 5,225 .23% 10,285 California 150,805 .64% 345,445 Coloradog 8,867 .31% 14,719 Connecticut 10,816 .35% 23,108 Delaware 968 .16% 1,485 Floridab, f 22,858 .24% 21,386 Georgiaa 6,747 .12% 7,612 Hawaii 1,709 .18% 2,875 Idaho 4,283 .45% 1,177 Illinois 16,301 .14% 33,734 Indiana 21,808 .40% 13,391 Iowa 12,605 .43% 7,849 Kansasb 9,057 .38% 6,137 Kentucky 7,329 .20% 6,065 Louisianac Maine 6,013 .53% 4,804 Maryland 5,082 .12% 11,441 Massachusettsb, d 46,374 .81% 90,467 Michigan 43,933 .47% 69,653 Minnesotae 35,300 .87% 5,800 Mississippi 400 .02% 372 Missouri 31,209 .63% 14,659 Montana 6,248 .79% 1,969 Nebraska 5,429 .35% 3,286 Nevada 1,071 .13% 1,092 81 Total Number Percentage of 1985 Total of Attendant State Population Expenditures State Service Clients Estimate (in thousands) (n=135) (n=140) New Hampshire 3,893 .42% 3,087 New Jersey 1,850 .03% 3,809 New Mexico 2,200 .17% 7,384 New York 124,808 .71% 504,361 North Carolina 626 .01% 1,657 North Dakota 59 .01% 192 Ohio 26,359 .24% 46,942 Oklahoma 9,130 .30% 35,395 Oregon 10,041 .38% 15,330 Pennsylvania 59,995 .51% 22,338 Rhode Island 1,578 .17% 3,754 South Carolina 9,690 .31% 14,501 South Dakota 4,020 .58% 1,910 Tennesseeb 875 Texas 68,880 .48% 108,288 Utah 522 .04% 1,048 Vermont 362 .07% 611 Virginia 5,000 .09% 14,191 Washington 10,167 .25% 22,735 West Virginiaa 5,177 .27% 4,814 Wisconsin 15,600 .33% 25,953 Wyomingc Dist.of Columbia 3,285 .55% 8,853 TOTAL 850,388 $1,568,458 Data added from two additional programs from questionnaires received late from Georgia and West Virginia. Number does not include Title III recipieW:s because administrator unable to isolate attendant services from adult day care, home- delivered meals, counseling and other Title III services. No data available. Alaska & Massachusetts figures do not include HHA programs. Decided they were strictly short-term. Minnesota does not include Personal Care Services figures. Florida does not include elderly waiver. Colorado does not include HHA program/could not separate ILP- delivered services from regular Medicaid program. 82 One hundred and twenty-five of the program administrators were able to report on the disabilities of the people they serve (Table 24). Almost 50% of the programs served people with all types of disabilities. TABLE 24 NUMBER AND PERCENTAGE OF PROGRAMS SERVING PEOPLE WITH VARIOUS DISABILITIES (n=125) Programs Type of Disability Number Percent All Types 57 46% Physical Disability, Brain Injury 35 28% Physical Disability Only 16 13% Physical Disability, Brain Injury, Mental Disability 10 8% Physical Disability, Brain Injury, Intellectual Disability 5 4% Physical Disability, Mental Disability 1 1% Physical Disability, Intellectual Disability 1 1% Data from 90 programs indicate that users of attendant services are largely older people (Table 25). TABLE 25 AGE GROUPS SERVED (n=90) Age Group Number Percent Less Than 60 or 65 142,562 23% Greater Than 60 or 65 476,851 77% 83 As the make-up of the aging population might lead one to expect, seventy percent of recipients are women. Eighty-one percent are white, 12% Black, 5% Hispanic, with less than 2% Native American or Asian. These figures reflect the racial composition of the population as a whole, but not necessarily of the disabled population, since a disproportionately high incidence of disability has been found among black people (Bowe, 1985). Expenditures Based on reports from 140 programs, total expenditures for all attendant service related programs were approximately $1,568,458,000 ($1.6 billion) in FY1984. 22 The range of expenditures per program was from a low of $2,000 (the Indiana Medicaid Waiver providing household assistance, short-term personal assistance (respite) and case management to 10 people) to a high of $458,200,000 per year (the New York Personal Care Services Program serving 52,400 people). The average per client expenditure per year was $2,862, with the median being $1,421. The state with the highest expenditure was New York ($504m), followed by California ($345m), and Texas ($108m) (Table 23). While New York spends the most, California serves the largest 22 Expenditures for FY1985 were used here in 33 cases for which 1984 data were unavailable. FY1983 figures were used for 4 programs. Also included are expenditures on 28 programs which include more than attendant services because attendant services could not be isolated. However, expenditures from 6 Title III programs are not included, amounting to $436 million, because they included large numbers of people receiving home delivered meals and adult day care. 84 number of people. This seeming anomaly is explained by the fact that New York relies heavily on more costly "personal care workers" as providers, whereas in California people needing more than 20 hours per week of personal assistance are permitted to hire less costly individual providers. The distribution of expenditures among the various state and federal funding sources is presented in Table 26. Expenditures on attendant services are divided almost equally between federal and non-federal sources. States currently bear 40% of the expenditures on attendant services, either as the major funding source of a program or as a match with federal funds. Medicaid, the Social Service Community Block Grant Program and the states together provide 87% of the monies available for attendant services. TABLE 26 TOTAL EXPENDITURES ON ATTENDANT SERVICES BY FUNDING SOURCE (n=129) Funding Source TOTAL FEDERAL 814,404,000 52% Title XIX Regular Program 384,740,000 25% Waivers 19,294,000 1% Title XX 320,703,000 21% Title III 37,281,000 2% Title VIIA 14,000 0% Other Federal 52,372,000 3% TOTAL NON-FEDERAL 723,375,000 48% State 617,732,000 40% County/Municipal 84,438,000 6% Other 13,004,000 1% Client Fees 7,166,000 0% Private 1,035,000 0% GRAND TOTAL 1,537,779,000 100% 85 Expenditures From Programs Not in WID Survey The WID survey did not include programs funded by other sources such as the Veterans' Administration Aid and Attendance Allowance and Developmental Disabilities and Mental Health programs. In addition, of course, a large proportion of attendant services are either paid for by the user or provided without pay by volunteers. 23 Each of these will be discussed. In 1984, the Veterans' Administration paid 8,493 people $101,036,520 in "Aid and Attendance Allowances" in addition to their disability pension. Of these, 6,860 received $906 per month. The remaining 1,633 people, deemed to be at risk of institutionalization, received $1,350 per month (McCarthy, 1985). Currently, both Developmental Disability and Mental Health Services funds are being utilized to maintain individuals outside of institutions. Further investigation needs to be done to determine the extent of separately funded and administered attendant services available to these two populations. Many individuals receive attendant services from family and friends free of charge. Still others pay for attendants on their own without public assistance of any kind. Again, the extent to which this occurs and the circumstances under which it occurs are major questions for future research. If one combines the $1.6 billion expended by the programs surveyed by WID with the $.1 billion expended by the VA, then it appears that 1984 expenditures on attendant services amounted to 23 The omission of private health care insurers is not an oversight. Few health insurance policies offer even a minimal amount of home health benefits; none includes long-term attendant services (Alpha 1984). 86 at least $1.7 billion dollars and reached at least 859,000 people. 87 CHAPTER VII AVAILABILITY OF SERVICES ACROSS THE UNITED STATES This chapter compares the availability of attendant services across the fifty states and the District of Columbia. Nine states - Alaska, Delaware, Georgia, Louisiana, Minnesota, Montana, Tennessee, Virginia, and Wyoming - have no comprehensive attendant services program (that is, no program that combines personal maintenance and hygiene, mobility, and household assistance services) serving any of the three basic age groups- children, working age adults or older adults (Table 27). In addition, there are four states (Arkansas, Colorado, North Dakota and West Virginia) that offer comprehensive attendant services to some age groups but not all. In Colorado and Delaware, however, the lack of a combined service program is mitigated by the existence of separate household and personal maintenance and hygiene programs. In other words, in 8 states, the full range of publicly-funded attendant services are not available for people with disabilities of any age; and in 3 states services are available for some people but not others, depending on age. In 39 states plus the District of Columbia, then, programs exist that offer attendant services to all age groups. We emphasize that the finding here is only that such programs exist; no inferences are to be drawn as to their adequacy in terms of either quality or number served. In addition, these programs differ widely in their capacity to meet the needs of disabled people in their jurisdiction because of marked variations in eligibility criteria, services offered, maximum allowances, other rules and regulations, and, most important, funding constraints. TABLE 27 NUMBER OF PROGRAMS PER STATE OFFERING VARIOUS TYPES OF PERSONAL ASSISTANCE BY AGES SERVED State Attendant Personal Maintenance/ Personal Household Only Respite Hygiene and Household Maintenance/ Separately Hygiene Only Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged Alabama 3 3 2 1 1 1 Alaskaa 1 1 2 1 1 2 Arizona 1 1 1 Arkansas 1 1 1 1 1 I I California 2 2 3 1 1 1 1 1 3. Colorado 1 1 1. 1 1 2 2 Connecticut 1 2 2 3 3 2 1 2 3 Delaware 2 2 2 Florida 1 1 2 2 2 1 Georgia 1 1 1 1 1 1 Hawaii 1 1 1 1 2 1 1 l Idaho 2 2 2 1 2 2 3 Illinois 1 1 2 1 1 1 Indiana 2 2 2 2 I 1 1 3 Iowa 2 2 2 2 2 2 Kansas 1 1 1 3 3 1 2 Kentucky 1 2 3 1 2 3 Louisiana Maine 5 5 5 1 2 2 Maryland 3 3 3 2 3 2 Massachusetts 2 4 3 1 1 1 1 2 2 Michigan 2 1 2 1 1 Minnesotab 1 1 1 Mississippi Missouri 1 2 1 2 1 3 2 3 1 1 1 2 Montanab 2 2 3 1 1 1 Nebraska 1 1 1 2 2 1 1 1 1 Nevada 1 1 1 2 3 1 1 1 1 New Hampshire 2 2 2 1 2 2 1 2 2 New Jersey 3 3 3 1 2 2 State Attendant Personal Maintenance/ Personal Household Only Respite Hygiene and Household Maintenance/ Separately Hygiene Only Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged Child Adult Aged 22311 1 New Mexico 1 2 2 New York 3 3 3 1 1324 11 1 North Carolina 2 2 2 North Dakota 1 1 3 34 Ohio 4 4 5 Oklahoma 1 1 1 111 1 1 1 Oregon 1 2 2 1 1 1 Pennsylvania 2 2 2 1 1 Rhode Island 1 2 2 111111 1 22 South Carolina 1 2 2 South Dakota 1 2 2 1 1 Tennessee OD 11 Texas 3 4 4 1 23 kID Utah 2 2 2 1 1 133 Vermont 1 1 1 1 11 111 22 11 Virginiab Washington 1 2 2 1 1 West Virginiab 1 1 1 1 1 1 Wisconsin 3 2 2 1 1 1 433 Wyoming 1 1 1 1111 1 Dist.of Columbia 1 1 1 Alaska had 9 people receiving "personal care" services as exceptions to the General Medical Relief Program. This is not reflected in the table, and the program no longer exists. b Minnesota, Montana, Virginia and West Virginia have somewhat better services than the table suggests because the programs listed as purely household assistance actually have "personal care" components, but they do not meet our criteria for full personal maintenance/hygiene services. 90 The extent of availability of short-term (respite) services is encouraging but also must be interpreted with caution. Six states offer no short-term services for any age group: Arizona, Delaware, Louisiana, Mississippi, North and South Dakota (Table 27). Six states offer no short-term services for disabled children: Florida, Indiana, Kansas, Virginia, Washington and West Virginia. Four states offer no short-term services to children or working age adults: Minnesota, Pennsylvania, Tennessee or Wyoming. And two states, Missouri and Michigan, do not have short-term services available for disabled working age adults. Even though there are 34 states with short-term services available for all age groups, it must be emphasized that the quality and quantity of the short-term services available is not equivalent across these programs. Programs range from providing 24-hour/day services for a week or two to merely providing oneto two-hours of services. Some require the individual who is disabled to move into a hospital or institution while family members or regular attendants are free to go wherever they like. Other programs provide the services in the disabled person's home. 91 CHAPTER VIII NEED VS. ADEQUACY OF THE SYSTEM TO MEET THAT NEED Estimating the number of people in the United States who could use personal assistance services is a very difficult task 24 . Three comparatively recent studies have attempted to address the issue. 25 One of these - the Home Care Supplement to the 1979-1980 National Health Interview Survey (NHIS) is used as the basis for discussion here because it was the only study that collected data nationwide. In addition, it includes all age groups, was conducted fairly recently and has the most conservative estimates. Conducted by the U.S. Bureau of the Census, the NHIS involved interviewing a sample of civilian, non-institutionalized people in the U.S. over a period of two years. Respondents were asked whether they received or needed the assistance of another person in performing seven basic physical activities: walking, going outside, bathing, dressing, using the toilet, getting in or 24 See DeJong, G. and Sager, A. (1977) for a fuller discussion of the problems of need estimation from the various existing studies. 25 Connell, Vagnoni and Vafeas (1984, p. 41) conducted a random sample telephone survey to estimate the total number of users of both personal and domestic services in Pennsylvania. Results showed that 1% of Pennsylvanians between the ages of 18 and 64 and 5.76% of those over 65 used assistance from another person on either a weekly or daily basis. DeJong and Sager (1977, p. 40) prepared an estimate of the number of people in Massachusetts needing some help from another person with personal care, on an intermittent or steady basis, based on previous national surveys as well as a 1972 study in Ohio and the 1974-75 Branch-Fowler Survey of the elderly and chronically disabled in Massachusetts. DeJong and Sager estimate that in Massachusetts, 1.1% of children, 1% of working age adults and 17.7% of older people require some help, while the number of adults of all ages requiring assistance on a regular basis is less than half of these figures. 92 out of bed or chair, and eating. The percentage of people needing help with one or more physical activities was: 0.23% of children under the age of 17, 0.67% of adults between the ages of 17 and 64, and 6.67% of adults over 65 years old (Czajka, 1984, p. 39). In all likelihood these figures understate the number of people needing attendant services. They do not include people who need assistance with household maintenance tasks such as housework, meal preparation and shopping. 26 They also do not include the institutional and nursing home population who could live in the community if adequate personal assistance were available. Table 28 compares the NHIS estimates of need with the WID data on the number of people being served. This comparison indicates that 74,473 children who need personal assistance services do not get them from the public programs surveyed for this study. 27 There are an estimated 758,938 working-age adults and 903,202 people 65 or older who need assistance but do not get it from public programs surveyed here. 28 All told, then, there are an estimated 2,134,111 non-institutionalized people needing personal assistance who do not receive it from the publicly 26 The survey did ask about people needing assistance with four household maintenance tasks but results have been reported in a way that cannot produce unduplicated counts of people needing help with both household and personal maintenance. 27 This may be an overestimate of children not receiving services because specifically Developmental Disabilities programs were not included in the WID survey. 28 The cut-off point for older adults is not precise because some programs, mainly Title III, used age 60 and others used age 65. For the most part the figures on older people represent people over age 65 because much fewer people are receiving attendant services from Title III programs. 93 funded, community-based attendant service programs in the WID survey. If the 8,493 veterans who receive Aid and Attendance Allowances (McCarthy, 1985) are subtracted, then a more accurate estimate would be that there are at least 2,125,618 non- institutionalized people who are not receiving publicly supported, community-based attendant services who could benefit from such services. TABLE 28 COMPARISON OF HOME CARE SURVEY ESTIMATES OF NEED FOR ASSISTANCE WITH PERSONAL MAINTENANCE TASKS WITH NUMBER ACTUALLY BEING SERVED IN PUBLICLY FUNDED PROGRAMS FROM WID SURVEY .) Age Group 1984 Total Home Care Survey WID Survey U.S. % Needing Help # Needing Help % Population With 1 or More With 1 or More Being Being Tasks Tasks Served Served (FY84) Children 62,688,000 .23% 144,182 .10% 59,527 (17 & under) (under 17) (under 18) Adults 145,430,000 .667% 970,018 .09% 136,062 (18-64) (17-64) (18-60 or 65) Aging 28,040,000 6.67% 1,870,268 2.34% 654,798 (65+) (65+) (60 or 65+) To make this estimate more complete, we must go one step further and consider the institutional population. There were 118,982 mentally retarded people in institutions in 1982, 1,303,000 nursing home residents in 1977 and 232,340 people with mental disabilities in institutions in 1979, totaling about 1.7 million people (Czajka, 1984, pp. 13-17). If one assumes that half these people could live at home with adequate personal assistance, then the number of people who may not be receiving community-based publicly supported attendant services who could benefit from such services could be estimated at 2,975,618 (3 million). 94 The average cost per user of attendant services from the WID study amounts to $2,840 for all types of service. If this figure is multiplied by the estimated number of people not being served, 3 million, then the additional expense could be estimated to be approximately $8.5 billion. Not all of this estimated $8.5 billion would need to be new money, however. Some of the needed funds could be obtained by diverting Medicaid funds now going into institutional and nursing home care as has been proposed by Senators John Chaffee (Rhode island) and Bill Bradley (New Jersey) (Senate Bill 873, 1985). Money could also be diverted from the more costly contract agency mode of service delivery to the less costly independent provider mode whenever feasible, thereby freeing up dollars for new users. Money could also be saved by combining programs in a state in order to eliminate duplication of administrative costs. 29 Nor would the source of new money need to be public funds. Private insurers may eventually take some responsibility for underwriting the costs of personal assistance services (Alpha, 1984). More immediately, as more attendant programs encourage people to work and 1619 becomes a reality, some users would bear part of the costs of personal assistance services according to a sliding scale and/or b.yin paying taxes on earned income (see footnote 4, p. 7). 29 Currently, the state of Wisconsin has been consideriwi ways to combine its personal assistance programs, for example. 95 CHAPTER IX CONCLUSIONS AND RECOMMENDATIONS As this study clearly indicates, there is no comprehensive system of attendant services in the United States. There is no broad federal policy; rather, scattered references to personal assistance services are found embedded in policies established by Congress and federal agencies with respect to programs such as Medicaid and the Older Americans Act. Consequently, jurisdiction over federal personal assistance programs is divided among several different agencies. The programs that exist are funded by a wide variety of federal and non-federal sources. Responding to what they perceive as a major need, states have developed their own policies and programs, usually (but not always) making use of those disparate federal funding sources that are available. States have generally failed to benefit from the experience of other states, apparently because until recently there has been little if and communication between them. All this has resulted in personal assistance services which are fragmented, lack coordination, usually medically oriented, burdened with work disincentives, inequitably distributed across the United States, and delivered by personal assistants who are poorly paid. The lack of a federal personal assistance policy has affected the lives of at least 3.8 million Americans of all ages with disabilities who presently are either receiving personal assistance services which may be inadequate or who are receiving no publicly-funded services at all. Many of these people are denied independent lives because they are forced to either 1) 96 depend on relatives and other volunteers for personal assistance, 2) live in institutions because no community-based personal assistance services are available, or 3) make do with less than adequate services from a variety of providers over whose services they have little or no control. It is the responsibility of organizations of disabled people and older people as well as the general public to begin making Congress aware of the impact on people's lives that the lack of a comprehensive, funded national personal assistance policy has had. The World Institute on Disability is committed to working with people throughout the country towards the establishment of a comprehensive, nationally-funded personal assistance policy. We know how critical these services are to people with disabilities everywhere and from our first hand experience in California, we have seen the benefits such services provide. The results of this survey have reinforced WID's awareness that the lack of a comprehensive national personal assistance policy consistent with the principles of independent living has contributed to the unnecessary isolation and dependency of untold numbers of Americans with disabilities. Given this situation, our foremost recommendation is that a federal personal assistance services policy consistent with the principles of independent living be established and that a national personal assistance program be developed. This program should be funded by the federal government and private insurers and implemented by the states in accordance with policies and regulations promulgated at the federal level. Just as it took the enactment of Medicare, Medicaid and the Older Americans Act 97 to ensure that older people and poor people receive a more equitable share of this country's medical care and social services, it is now necessary to institute a National Personal Assistance Service Program in order to make personal assistance services available across the United States to all those who could benefit from them. There are many different groups of people - including policy makers, advocates, and people of all ages with physical, mental, and intellectual disabilities - who support the establishment of adequate, equitable community-based personal assistance services. If these groups and individuals come together in a broad national coalition, they might make rapid progress toward the development of a national personal assistance service. To this end WID Recommends: 1) that meetings of federal and state policy makers with representatives of and advocates for people of all ages with all types of disabilities be convened and funded by the federal government. The purpose of these meetings would be to discuss the implications of this study and WID's recommendation in order to develop proposals regarding the development of a national personal assistance program for independent living; and 2) that the federal government study what other countries have done to incorporate personal assistance services into their national social service policy. We now present a series of other policy and action recommendations which should guide the development of a National Personal Assistance Services Program. The first twelve of these were adopted by the National Attendant Care Symposium sponsored by the National Council on the Handicapped. The remaining four 98 policy recommendations have been developed 'by WID as a result of i t s research. Following each policy recommendation is a discussion of the reasoning behind it and a series of recommendations for action in accordance with each suggested policy. RECOMMENDATIONS 1. The program should serve people with all types of disabilities on the basis of functional need. The WID survey results indicate that people with physical disabilities are eligible to be served by all the programs, but programs vary as to whether they will also serve people with other disabilities such as brain injury (90%), mental or psychiatric disability (62%) and intellectual disability or mental retardation (60%). Personal Assistance services have traditionally been conceived as meeting the needs of persons with physical disabilities. The term, however, rightfully includes any assistance which compensates for an individual's functional limitations. In this sense, many consider interpreters for persons with hearing disabilities, readers for persons with visual disabilities, and social guidance for persons with mental and intellectual disabilities to fit within this category. A good example of a program already taking this approach is Title III of the Older Americans Act which has geared its services to older people on the basis of functional difficulty rather than diagnosis. As a consequence, the list of services covered by Title III includes attendant services as well as communication and cognitive assistance. Few would question the need to provide personal assistance 99 services to people whose disabilities are so substantial that they need assistance for several hours a day or more. It must be borne in mind, however, that these services can also be essential to people who need much smaller amounts of time. Recipients of In-Home Supportive Services in California, for example, receive an average of 12 hours of service a week. Even if the need for personal assistance may be minor in terms of the time required, having it met may nevertheless be a crucial link in an indi vidual's support system for independent living. WID Recommendations: 1) that every state make personal assistance services available to people with disabilities of all kinds; 2) that more information be gathered on the availability, type of services offered and quality of separate personal assistance service programs for people with intellectual, mental and sensory disabilities; 3) that the extent of need for personal assistance services to these three populations be explored; and 4) that demonstration projects be funded that combine services to these three groups with services to people with physical disabilities and brain injury. 2. The Programs Should Serve People of All Ages. There are two issues involved here: 1) the need for people of all ages to be able to get personal assistance services, and 2) the need to combine in one program services for people of all ages. The survey results show that people over 60 or 65 are served by almost every program in the country; adults between the ages of 18 and 60 or 65 can receive services from three-fourths of the programs. However, such options are much less likely to be available to children (and their parents). Indeed, in six 100 states, parents of children with disabilities can receive no services at all for their children (Table 22). In addition, only 41% of the programs serve people of all ages. The rest serve single age groups or various combinations: 26% serve all those over 18 years old; 24% serve older people only; 4% serve only children and 6% only those between 18 and 65. The need for services for disabled adults of all ages generally is not contested. However, the necessity to provide personal assistance services to children with disabilities is still not widely accepted. Outside assistants could assume responsibility for at least part of the extra time (that is, time over and above what is normally required by a non-disabled child of the same age) that needs to be devoted to meeting the needs of a child with a disability. Making such assistance available could reduce financial and emotional stress in the family and enhance development of independent living in children and adolescents. Combining personal assistance programs for people of all ages (and disabilities) can only help to reduce administrative costs, avoid duplication and foster fruitful exchange of ideas for service delivery. The fact that so many existing programs successfully serve all age groups demonstrates that this is well within the realm of feasibility. The State of Wisconsin has already instituted discussions between the heads of the various personal assistance programs in Wisconsin to explore ways to combine them and avoid duplication of expenditures and services. Other states should follow suit. WID Recommendations: 1) that every state make personal 101 assistance services available to all age groups; 2) that projects be established to look at how children and adolescents who are disabled can benefit from attendant services; and 3) that states begin the process of consolidating programs for different age groups. 3. The program should provide for the optimum degree of self- direction and self-reliance as individually appropriate and offer the users a range of employer/employee and contract agency relationships. Currently approximately a quarter of the programs offer service users a choice between individual providers who are more or less managed by the service user and contract agency workers or government staff who tend to be much less consumer oriented. In addition, some of the 34 programs which use individual providers are in states which also have separate programs using contract agencies. Users in these states may thus also have a choice, although this choice may be more theoretical than real, since most programs which rely on individual providers have smaller caseloads. At its maximum, self-direction involves locating, interviewing, screening, hiring, managing, paying, evaluating and terminating personal assistants. Various of these functions, such as locating, interviewing and screening, may be performed by an agency or other third party while the individual maintains control of other tasks, such as hiring, management, payment and termination. For persons with limited cognitive function, more third party involvement and supervision may be required; such individuals, however, should still be able to maintain control to a degree consonant with their ability. The issue of user control 102 is of extreme importance to The Independent Living Movement because often people with disabilities never develop (or, having once developed it, lose) the ability to be independent because other people take charge of their lives. WID Recommendations: 1) that all programs allow users the choice of individual providers or trained home health aides and homemakers from public or private agencies; and 2) that a continuum for managing service delivery be made available, ranging from consumer management (to the maximum extent feasible) to total agency management; and 3) that users of short term periodic services also have the option to locate, screen, train, hire and pay attendants if desired; and 4) that policies be developed that presume consumers prefer self—direction and require an evidential finding that an individual does not want or is incapable of total self—direction. 4. The program should offer assistance with personal, cognitive, communicative, household and other related services. The survey results show that personal assistance service programs vary widely with respect to the types of service provided. Currently only a third of the programs offer what we would consider a comprehensive service package of attendant and household assistance services, including catheter management. Very few programs offer readers (19%) or interpreters (13%), even though these services are often essential to people with impaired vision or hearing if they are going to function effectively. We suspect that even fewer programs offer cognitive services such as money management. Generally these services, if they are available at all, are provided by separate programs. 103 Personal assistance programs need to provide attendant services, communication assistance, and cognitive assistance or assistance with any other tasks which are essential to the maintenance of independence and productivity for persons with any type of disability. In some states these services are currently fragmented into separate programs so that the number of people going into a person's home is often needlessly increased. Efficiency and continuity are enhanced by allowing any assistant to perform any task, instead of limiting one provider's duties to personal hygiene and management services and another's to household assistance, for example. WID Recommendations: 1) that all rural and urban areas in the U.S. have a program offering the full array of personal assistance services needed by disabled people of all ages and all disabilities - physical, intellectual, mental and sensory: 2) that the states which offer services through separate household assistance and personal hygiene and maintenance services programs establish new programs which combine these services in terms of service delivery as well as organizational structure. 5. The Program should provide services 24 hours a day, 7 days a week, as well as short-term (respite) and emergency assistance as needed. Two-thirds of the programs in the survey offered services 24 hours a day, seven days a week, and more than half the programs offer some sort of short-term services. This is a good beginning, but obviously it is not adequate. Although we did not ask specifically about emergency services, few program administrators mentioned them when given the opportunity to identify additional services not listed in the questionnaire. It 104 is our impression that emergency back-ups for independent providers, if they exist at all, can be found through the Independent Living Programs. Personal assistance services are life-sustaining in many cases and therefore their availability should obviously not be limited to certain hours. Programs should have back-up assistants available on a short-term or emergency basis to fill in the inevitable gaps that occur in the personal support systems of individuals with extensive disabilities. In cases where the bulk of services are provided by family members or friends, these arrangements are much less likely to break down if services are available on a short-term as well as emergency basis. WID Recommendations: 1) that all programs make services available 24 hours a day, 7 days a week; 2) that a pool of emergency assistants be maintained in every locality; 3) that short-term services be established for all age groups in the 16 states that do not offer them and 4) that short-term services be available for longer periods (2 - 4 weeks) or less on a regular or periodic basis; and 5) that short-term and emergency services be provided in the location the user requests, instead of being restricted to institutional settings. 6. The program should serve people at all income and resource levels on a cost sharing basis as appropriate and employment disincentives should be eliminated. The vast majority of existing programs discourage people from working. Only 36% of them had graduated cost-sharing formulas. Only 10 programs had an income ceiling above $15,000 a year. Without any public assistance at all, a single person with 105 an extensive disability requiring approximately 20 hours of personal assistance service per week would need, at barest minimum, $15,000 a year in income, i.e. $5,200 to pay his or her attendant plus a very modest $9,800 for living expenses, not to mention any disability-related expenses that might arise. A major disincentive to employment would also be eliminated if Medicaid benefits or other provisions for health care could be made available to disabled workers if they are unable to obtain other health insurance. Currently, unless one is fortunate enough either 1) to work in a large organization with a nonrestrictive group policy, 2) to live in the State of Wisconsin, which has a state insurance fund for the disabled (Griss, 1985), or 3) to be eligible for Medicaid under Section 1619 of the Social Security Act (see footnote 4, p. 7), it is almost impossible for people with disabilities to obtain health insurance. WID Recommendations: 1) that all personal assistance service programs establish an appropriate cost-sharing formula and a realistic income ceiling from which all reasonable disability-related expenditures are excluded; and 2) that Medicaid benefits or other federal health insurance be made available to disabled workers who are unable to obtain private health insurance at reasonable cost. 7. Services should be available wherever they are needed (eg. at home, work, school, on recreational outings, or during travel). Currently personal assistance services are rarely available outside the home unless a disabled individual employs his or her own assistant. Few programs provide attendants in work, school, 106 or recreational settings or for out-of-town trips. Services are provided only to the extent necessary to keep someone functioning at home or, in the case of children, functioning at school. WID Recommendations: 1) that personal assistance be made available to users, not only for personal maintenance, hygiene and mobility tasks and housework, but also for work, school and recreation needs as well; 2) that eligibility requirements not limit the geographic mobility of the individual, so that people needing personal assistance are allowed to travel outside a state and still retain coverage for personal assistance services; and 3) that employers in both the private and public sectors explore the possibility of making personal assistants available in the workplace as is already being done in Sweden (Ratzka, 1986). 8. Personal Assistants should receive reasonable remuneration and basic benefits. The poor quality of attendants and the high rate of attendant turnover are major concerns for program administrators and consumers alike. This is directly attributable to the low wages that all types of attendants receive ($3.87/hour for individual providers and about $4.75/hour for contract agency and government workers) and the minimal benefits (usually none) that contract agency workers and independent providers receive (Table 14). WID Recommendations: 1) that attendants be paid at least 150% of the minimum wage with periodic increases to reflect inflation and growth in experience and qualifications; 2) that attendants receive paid sick leave, vacation and group health insurance benefits in addition to Social Security, worker's compensation and unemployment benefits; 3) that joint 107 discussions between unions and users be instituted to explore ways in which users and assistants can work together to provide better benefits for each other. 9. Training for administrators and staff of administering agencies and provider organizations should be provided. Because personal assistance for independent living is relatively new as a human service profession, and because a definite philosophical foundation underlies the delivery of these services, it is unlikely that new program administrators and staff will have the knowledge or experience necessary to take the proper approach in operating such programs. It is therefore essential that they be trained and inspired by people who are thoroughly knowledgeable about personal assistance services, both in conceptual and practical terms. WID Recommendations: 1) that the legislation establishing the program (as well as the implementing regulations) require that administrators and agency personnel undergo appropriate training; and 2) that qualified disabled persons who use personal assistance services play a significant role in this training nationwide. 10. The program should provide recruitment and training of personal assistants as appropriate. The issue of training for personal assistants is receiving much attention across the country. Besides contract agency training programs, some community colleges and technical schools are offering courses as well as some ILPs. The controversy regarding these programs centers on the degree to which independent living philosophy is taught, the degree to which assistants are encouraged to look to 108 their clients for training in their particular needs, and the level and type of training (and perhaps licensure) necessary for Ti assistants who will be working with people with intellectual or mental disabilities. Some people prefer to hire totally untrained assistants and personally train them to meet their specific needs. Others would rather only consider assistants who have already been screened as to their personal qualifications and experience. Those with intellectual or mental disabilities and brain injury who require assistance in financial management, adherence to medication schedules and other tasks are likely to need assistants who can pass very strict tests of character, reliability and experience. WID Recommendations: 1) that all personal assistant training programs be imbued with the Independent Living philosophy; 2) that training programs be managed and administered by the Independent Living Centers, wherever possible; 3) that personal assistants be taught that, whenever possible, the bulk of their training will be provided by their clients; 4) that users of personal assistance be instructors in the training program; 5) that training of personal assistants not be mandatory in most cases; 6) that registration and special training be required for those working with people with mental or intellectual disabilities; and 7) that personal assistant referral, recruitment and screening services be available for users who desire them. 11. The program should provide effective outreach and training of consumers as appropriate. Many people who could benefit from personal assistance services are likely to be unaware of their 109 availability. Effective efforts to reach out to potential users are thus essential. Effective outreach tends to increase program costs, however, so it is not surprising that programs are unenthusiastic about doing it. Programs therefore need to be required to conduct effective outreach. Informing people that services are available is not sufficient, however. People need to be made aware of what personal assistance services are and how these services can help them live more independently and productively. People living in nursing homes or growing up with their families in dependent, sheltered environments, often have no conception of the degree of personal independence they can achieve or of the programs available to assist them in reaching these goals. Even though the independent living movement has had a considerable impact during its first 15 years .of existence, there are still thousands of people who have not been touched by its precepts. Once they become aware of the benefits of using personal assistants, many people with disabilities will need training in how to use personal assistant services to best advantage and how to establish and maintain effective working relationships with their assistants. Managing attendants is somewhat akin to operating a small business in that it requires personnel manage ment, budgeting, employee supervision and training, payroll management and the like. A number of Independent Living Programs, being consumer-oriented, have recognized the importance of consumer training, developed training programs, and, in several cases, published training manuals (see Bibliography). WID Recommendations: 1) that all personal assistance 110 service programs be required to undertake outreach efforts such as visits to rehabilitation centers, sheltered workshops and 0 schools, as well as brochures, public service announcements on T.V. and radio, buses, and so on; and 2) that personal assistance service programs offer both training for consumers in management )I of personal assistants and follow-up. 12. Consumers should participate to a substantial degree in policy development and program administration. It is reasonable to assume that, except in the few cases where Independent Living Programs have taken a leading role in establishing and/or administering personal assistance programs, there has been no 1! significant involvement of consumers in program administration and policy development. Because the issues involved are so complex and so unfamiliar to most public administrators, and aI because consumer control is so central to the philosophy underlying this service, it is imperative that persons who use personal assistance services be involved, not merely in an al advisory or consulting capacity, but as full participants in the process of developing policy and administering personal assistance service programs. WID Recommendations: 1) that every personal assistance service program actively recruit personal assistance users to fill administrative and management positions; and 2) that 41 representatives of Independent Living Programs be included on policy boards and state/local commissions which establish personal assistance service policy, rules and regulations. 13. The program should not restrict individual providers from administering medications or injections or from carrying out 111 catheter management. Many programs define these services as medical or paramedical and only allow relatively well-paid Registered Nurses or Licensed Practical Nurses to provide them. Only 59% of the programs surveyed allowed administration of medications; 37% allowed administration of injections. Catheter management was provided by fewer than half the programs. Furthermore, in a number of states (most notably New York) where there are now no restrictions regarding paramedical services, nursing associations are campaigning to prohibit non-licensed providers from performing these tasks. Many disabled people reasonably argue that there is no justification for such restrictions, particularly in the case of individuals able to manage their own personal assistants. These restrictions only serve to drive up the cost of personal assistance services and complicate lives of people with disabilities by increasing the number of providers with whom they need to deal. Nowhere are concerns raised about the fact that nurses, as a matter of course, teach family members, friends and people with disabilities themselves to do tasks such as respiratory and catheter management, injections, or giving medication. Clearly, non-licensed providers as well can be trained to perform such tasks with due care. (For a fuller discussion of this issue see Zukas, 1986). WI D Recommendations: 1) that programs allow personal assistance users to train independent providers in catheter management, injections and medication administration; and 2) that programs ensure that all providers are allowed to provide the 112 full range of services, paramedical as well as non—medical. 14. Family members should be eligible to be employed as It individual providers. Many disabled people of all ages rely exclusively on spouses or other family members for personal assistance. Currently, however, only about a quarter of the programs surveyed (41) allow family members to be compensated for their services. In the case of adults who are disabled, when a user prefers to use a family member as an attendant, the family member should be paid for that service. The provision of personal assistance services is work; it should not be treated as forced volunteerism. Provision of money to hire an attendant should mean that anyone, related by blood or not, can be hired by the user. The issues involved here are dignity, control and choice 4, for both the user and the provider as well as reduction of family stress. WID Recommendation: 1) that all family members be eligible to be paid providers at a user's request; and 2) that a cash "personal assistance allowance" be provided which the disabled person can use to hire family members or to purchase services from the outside. 15. No one should enter a nursing home or institution unless a finding has been made that they cannot live at home even with it I personal assistance. Currently, many people enter nursing homes because alternative ways of meeting their needs either are not available or have not been considered. Once someone has entered a nursing home, it is often extremely difficult to reverse the process because family and community ties are often severed, 113 homes and household items have been sold, and so on. WID Recommendation: that all states institute mandatory programs to screen prospective nursing home admissions. 16. Mechanisms for accountability should be developed that take into account the user's need for independence. The debate over whether a program should mandate that users have the choice of hiring independent providers often comes down to questions of liability. Unfortunately there may be a major conflict between users' needs for independence and the states' need to protect themselves from liability for any abuse of users by personal assistants. The fear is greatest in the case of users who are not capable of completely managing their own personal assistant and in the case of users who need more "invasive" personal assistance with injections, medications, and catheters. WID Recommendation: that a conference of independent living activists, users and program administrators be convened to discuss the issue of liability more fully. Over the years the United States government has developed programs, such as SSI, in order to ensure that people who are disabled or elderly would have a minimum level of income. However, income maintenance is not in and of itself sufficient to insure independent living for people who are disabled. Personal assistance, particularly attendant services, is crucial to maintaining adults of all ages who are disabled in the community. Recognizing this fact, two key conferences were convened in 1985 by the World Rehabilitation Fund and the National Council on the Handicapped in conjunction with the World Institute on 114 Disability to discuss the state of personal assistance services in the U.S. and Europe. The participants at these conferences- including representatives of the Independent Living Movement, state and national disability organizations, state and federal government, researchers, consumers and advocates - all concluded, along with WID, that a national personal assistance program for independent living must be established. Maintaining the current non-policy will no longer work. What has emerged on a de facto basis as an outgrowth of existing federal programs is a medical model of personal assistance service delivery which is unnecessarily costly and inadequate. 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Independent Living Forum, 2, 1-7. Ulicny, G. & Jones, M. (1986). Step-by-step guide to training and managing personal care attendants. Kansas City, KS: University of Kansas, Research and Training Center on Independent Living. ; D j) ) 128 APPENDICES G 129 APPENDIX A DEFINITION OF TERMS ACTIVITIES OF DAILY LIVING Any of the activities which must be performed in the course of daily living. These activities include dressing, bathing, grooming, getting around, eating, preparing meals, shopping, cleaning house and engaging in work, school, community service or recreation. ADULT DAY CARE Provision during the day, on a regular basis, at a site outside of the home, of health, medical, psychological, social, nutritional,educational and other services that a person with a disability needs in order to remain in the community. AREA AGENCY ON AGING (AAA) The local planning and service units designated by the Department of Aging to administer a program of comprehensive community services for the elderly. AAAs can be a part of county government or a private non-profit agency. ATTENDANT SERVICES Assistance from others which compensates for a person's diminished ability to perform activities of daily living on her/his own. As used in this report and by the National Council on the Handicapped, attendant services include assistance with personal maintenance and hygiene, mobility and household maintenance tasks. CASE MANAGEMENT Coordination of a number of services, provided by various agencies, which are needed by a single individual. It includes assessment of client need; development of an individualized service plan; arrangement of services; and reassessment. The goal of case management is both to avoid service duplication and to facilitate an individual's receiving all needed services. CHORE SERVICES Infrequent tasks related to home maintenance such as repairs and yard work. Under Title XX, personal care activities and other domestic services such as shopping and housecleaning are included in this definition as well. `P 130 COGNITIVE ASSISTANCE Assistance with life management activities such as money management, planning and decision making. COMMUNICATION ASSISTANCE Interpreting for people with hearing or speech disabilities. COMMUNITY BASED SERVICES Services provided in a disabled person's home or other settings (e.g. work, school, recreation) which enable the person to function in those settings. CONGREGATE HOUSING Multiple unit housing with shared common space and shared services for those disabled people who are not totally independent but who do not need institutional care. COST SHARING An arrangement allowing individuals with incomes above a certain minimum to receive services and pay a portion of the cost of those services according to a sliding scale based on income. DISINCENTIVES TO EMPLOYMENT Provisions of entitlement programs (such as SSI, SSDI and Medicaid) which discourage their beneficiaries from seeking and/or holding employment because to do so would result in loss of income and/or benefits. (See also footnote 4, page 7.) DISABILITY A person with a disability is any person who (i) has a physical or mental impairment which substantially limits one or more major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment. ESCORT Accompanying and/or assisting a client while traveling to necessary activities, such as medical appointments, shopping, school, etc. Many attendant programs limit escort services to medical appointments only. FUNCTIONALLY DISABLED An impaired ability to perform activities of daily living. 131 HOME DELIVERED MEALS Meals prepared at a central location and delivered to homes of people who are old or disabled on a daily basis or less frequently. HOME HEALTH AGENCY - See HOME HEALTH SERVICES HOME HEALTH AIDE Person who, under the supervision of a home health or social service agency, assists older, ill or disabled persons with household maintenance and personal maintenance and hygiene tasks, and paramedical tasks. Home health aides are usually trained by the Home Health Agency or by outside training programs. HOME HEALTH SERVICES Home health services are services and items furnished to an individual in his or her home by a home health agency. The services are furnished under a plan established and periodically reviewed by a physician and include: part-time or intermittent skilled nursing care; physical, occupational or speech therapy; medical social services, medical supplies and appliances (other than drugs and biologicals); home health aide services; and homemaker services. HOMEMAKER Person who, under the supervision and training of a home health or social service agency, assists older, ill, or disabled persons with household maintenance tasks and child care. HOUSEHOLD MAINTENANCE TASKS Cleaning, shopping, meal preparation, laundering, heavy cleaning and repairs. INTELLECTUAL DISABILITY Mental retardation INDEPENDENT LIVING PROGRAM (ILP) A community-based non-profit organization, usually controlled by disabled people, which provides a variety of services directed at enabling disabled people to live independently. Among these services are peer counseling, personal assistance/attendant referral, benefits counseling, Independent Living Skills training, housing referral, and advocacy to remove social, economic and environmental barriers. 132 INDIVIDUAL PROVIDER An attendant hired and supervised by a recipient. LONG TERM "CARE" The whole spectrum of services potentially needed by disabled and ill people of all ages. The range includes health care, social services, housing, transportation, income security and jobs. MEDICAID Joint federal-state program, created in 1965 by Title XIX (Medical Assistance) of the Social Security Act. It is administered by the states and pays for health care services for people with very low income. In some states it also pays for personal maintenance/hygiene services or attendants. MEDICARE Federal program, created in 1965 by Title XVIII (Health Insurance for the Aged) of the Social Security Act. It provides health insurance benefits primarily to persons over the age of 65 and others who are eligible for Social Security benefits. MENTAL DISABILITY Psychiatric illness MOBILITY Ability to move from one place to another. NURSING HOME PRE-ADMISSION SCREENING A process conducted prior to entry into a nursing home to assess a person's functional abilities and service needs in order to determine whether the individual can remain living in the community rather than enter a nursing home. PERSONAL ASSISTANCE SERVICES Assistance, under maximum feasible user control, with tasks aimed at maintaining well-being, personal appearance, comfort, safety and interactions within the community and society as a whole. These tasks include: personal maintenance and hygiene tasks, mobility tasks, household maintenance tasks, infant and child care related tasks, cognitive tasks, security related services and communication services. 133 PERSONAL MAINTENANCE AND HYGIENE TASKS Dressing, grooming, feeding, bathing, respiration equipment maintenance, and toilet functions such as bowel, bladder, catheter and menstrual tasks. PROTECTIVE SERVICE Activities to assist individuals who, because of mental or physical disability or family situation are unable to protect themselves from neglect, hazardous situations or abuse without assistance from others. RESPITE SERVICES - See SHORT-TERM SERVICES SECTION 1619 OF THE SOCIAL SECURITY ACT See footnote 4, page 7. SECURITY RELATED SERVICES Daily monitoring by phone, special alarm systems, etc. SHORT-TERM SERVICES Intermittent attendant services replacing family members or other assistants on a scheduled basis which enable the individual with a disability to receive the assistance needed and be independent of the family for brief periods while allowing the family members to leave the home for anywhere from a few hours to several weeks. Short-term services are part of the continuum of personal assistance services ranging from daily service to assistance for very short periods. SUPPLEMENTAL SECURITY INCOME (SSI) A federal income maintenance program which provides a flat monthly grant to people who are poor, disabled or old whose resources and other income fall within certain strict limits. SOCIAL SECURITY DISABILITY INCOME (SSDI) A federal income maintenance program for people who become disabled after they have wcrked a minimum period of time depending on age at onset of disability. Payment amounts are determined by the duration and level of a recipient's prior earnings. There are no limits on a recipient's resources or other non-work related income. STATE AGENCY ON AGING The state-level agency that oversees the work of the Area Agencies on Aging in each state. 134 TEACHING AND DEMONSTRATION Instructional services which enable recipients of attendant services to perform some or all of those services themselves. TELEPHONE REASSURANCE Daily or regularly scheduled telephone calls made by family, friends or volunteers to check on those who are homebound. Di )1 135 APPENDIX B METHODOLOGY Programs Surveyed and Persons Interviewed The programs surveyed included the entire population of programs offering personal maintenance and/or household/domestic service on a long-term basis and short-term (respite) programs for disabled people of all ages in the 50 states plus the District of Columbia. Protective service programs (those aimed at preventing abuse or neglect of adults and children) were included only if the program served people on a long-term basis. Several types of programs were not included. Due to cost considerations, programs only for people with mental illness (mental disability) or mental retardation (intellectual disability) were not included. In general, because of fragmentation of the service system, in many states these programs are separately administered and include a different service mix. Temporary services for acutely ill or abused/neglected people, or for those in transition from hospital, nursing home, or institution to the community were not included. Vocational Rehabilitation programs which provide personal assistance monies solely for those currently receiving vocational rehabilitation services were not included. Shared attendant programs in congregate living arrangements were not included. Finally, purely household/domestic service programs were not included if there was not a "personal care" program in the state with which the domestic program could be paired. 136 Identification of the programs was a time-consuming process. An Independent Living Program (ILP) in each state was asked to provide WID with a list of programs and program administrators in that state. Administrators of the Title XX, Title XIX, and Title III programs were contacted in every state to determine if these programs offered long-term "personal care", domestic/household services or respite. In addition, each person contacted was asked to identify other programs in the state. Selecting which programs to include was difficult. In general the administrator's judgment was relied on as to whether or not a program fit the criteria. However, there were three cases in which we completed the entire interview and then decided that, in fact, the program was not a long-term or short-term (respite) program for people with chronic disabilities. In general interview the administrator of the specific program or the head of the administering public agency .7as interviewed. In a few cases, the state agency delegated full responsibility for administration and data collection for the program to a Center for Independent Living (e.g. ALPHA I in Maine). In these cases the administrator of the attendant program at the Independent Living Center was interviewed. One hundred seventy-three (173) programs in the U.S. were identified as offering comprehensive or selected personal assistance services on a long-term or short-term (respite) basis. There were 154 programs included in the survey results. Three administrators refused to be interviewed. Three questionnaires arrived too late for inclusion in the data set. Thirteen Title III programs were not included because the State Agency on Aging n 137 had no overall statewide data on the programs in their state. Data Gathering Procedure Data were gathered primarily through two methods, telephone survey and mail survey. Only one survey was completed by culling through reports sent to us by the program administrator. Thirty- six mail surveys were returned, of which were incomplete and had to be finished over the phone. One hundred eighteen (118) surveys were conducted entirely by phone. Telephone Survey Procedure The telephone survey was conducted from February to September, 1985. The procedure for the telephone surveys involved several steps. Potential respondents were identified as described above. These administrators were then called to verify that their program delivered some or all of the constellation of attendant services as we defined them. When an administrator agreed to be interviewed, an appointment was set at least two weeks hence. A copy of the questionnaire was then mailed immediately to the respondent so she or he could gather the necessary regulations and statistics for the interview itself. The interviews were conducte3 primarily by two members of the WID staff with some assistance from the principal investigator. AlI the completed questionnaires were reviewed by the principal investigator for internal consistency. If discrepancies were found, the respondent was called again to clarify the problem. Mail Survey Procedure The mail survey was conducted from September 1985 to mid- January 1986. As in the phone survey, potential respondents were 138 first called to verify if the program met our definition of attendant services. If it did, the questionnaire was mailed for the respondent to fill out and return; if it was not returned in two weeks as requested, a reminder was mailed. If the survey still did not arrive, the respondent was called and a phone interview was arranged. All returned questionnaires were reviewed for internal consistency and respondents were called to clear up discrepancies. Instrumentation The questionnaire was developed by reviewing current reports on attendant services from Pennsylvania (Connell et al., 1986) and Texas (Nosek, 1986), and an extensive review of the literature. The questionnaire went through several revisions as a result of WID staff input. A more open-ended questionnaire was pretested in Illinois. A revised, more close-ended question format was tested again in Missouri, Colorado, Massachusetts and Connecticut, from which the final version was constructed. Reliability Responses to questions were intended to be based primarily on objective, written data in the form of agency rules, regulations, budgets and annual reports. Consequently it was assumed that the answers were unaffected by who the respondent was, the date of the interview or the date the questionnaire was completed. However, states vary markedly in the sophistication or even the existence of management information systems, annual reports and even regulations. In some cases, respondents appeared not to 139 have a particularly good grasp of their programs, because either management information systems were poor or the administrator was new to the program or not close enough to the day-to-day administration of the program to know precisely the services offered, eligibility requirements, and the like. In the latter situation, when an administrator knew little about a particular program aspect, we attempted to interview other people involved in program administration to flesh out the data. The expenditure and case load data are not as precise as one would want for several reasons. First, programs varied in their use of fiscal or calendar year. We asked for FY 83/84 or calendar year 1984 data whenever possible. Two programs could only provide 1983 data, twenty-eight programs had information for FY 84/85 only and three programs gave us their budget estimates and case load goals for FY 85/86. No attempt was made to convert these figures to 1984 levels using the consumer price index or other means. Second, the expenditure and case load data is not precise because data collected from seven programs serving older people were not included. Administrators of these programs could not break out expenditures and numbers using attendant services from the total program. In these seven programs the bulk of the program appeared to be aimed at home-delivered meals and adult day "care" programs. Their inclusion would have greatly distorted the expenditure and case load data. Finally, it must be noted that we were trying to capture a moment in time in a constantly shifting picture. Since we stopped conducting interviews, several new programs have been 140 implemented and several no longer exist. By the time this document is published, more may start. In addition, several states are actively in the process of modifying existing programs.At least one state is looking into consolidation of 1' all its programs. Other states are considering or have already changed eligibility criteria. And, as discussed in the body of the report, Section 1619 of the Social Security Act should have a major effect on who is eligible for attendant services. Validity The key aspect of validity that must be considered here is whether the concepts and definitions established here were sufficiently clear and precise to insure that anyone else doing the survey would arrive at the same results. In particular, much rests on whether the programs surveyed in fact are short-term (respite), personal management/hygiene, household maintenance or attendant programs including both types of services, which serve people who are disabled on a long term basis. It is possible that some programs surveyed do not in fact meet these criteria. Distinguishing Medicaid "personal care" programs which are aimed mainly at people who are chronically ill and in need of significant amounts of medical services on an intermittent basis from attendant programs was especially difficult. Often we had to rely on the administrator's judgments as to whether their programs fit our criteria. The opposite problem occurred with program administrators who had a very narrow conception of attendant services, e.g. programs for severely disabled working age people who are employed or employable. In these cases, we had to push administrators to 141 agree that if, for example, their program served older people for only an hour or two a week on a regular basis, that it was in fact an attendant service program. Finally, we may also have missed some programs that should have been surveyed because none of our informants in a state knew about the program. There is another issue surrounding the validity of the results which must also be mentioned. At times, respondents told us that there was a difference between what a program was actually like and what it was supposed to do on paper. In particular, we found that on paper some programs providing services through independent providers did not offer assistance with catheters, medication and injections, but that providers actually did perform such services. In order to avoid the discrepancy, we asked respondents to tell us what was in the program rules and regulations, but this may not always have occurred. Operational Definitions All variables used in this report, except "need for attendant services", are derived from answers to the questionnaire (Appendix C). Administering Agency Administering agency was created by establishing seven categories: 1) General Social Service Agencies included Departments of Social Services, Human Resources, Community Services or Public Welfare, and Mixed Departments like Health and Rehabilitation Services; 2) State Agencies on Aging; 3) State vocational rehabilitation agencies; 4) Medical Assistance 142 Agencies; 5) State Health Departments; 6) Centers for Independent Living; and 7) Other miscellaneous administering agencies for developmental disability, visual disability and spinal cord injury. Age Groups Served and Eligible For age groups eligible, several categories were derived: 1) All ages, 2) 18 and above, 3) 60 or 65 and above, 4) 18-60 or 64, 5) Less than 18, 6) Less than 60 or 65. Because Title III uses 60 as the cut-off point and most other programs use 65, the cut-off in programs serving older adults was not sharp. For age groups served, in addition to the variations regarding the age cut-off for older adults, many programs could not specify the percentage of clients under 18 years old or over 75. So age groups served was only broken into two categories: 1) Less than 60 or 65, and 2) More than 60 or 65. Average Hourly Reimbursement Rate Average hourly reimbursement rate to contract agencies was determined in two ways. If an administrator could answer the question directly, then that answer was used (n=50, 42%). If an administrator could only speak in terms of reimbursement for each type of worker (n=37), e.g. home health aide, chore worker and/or housekeeper, then an average rate was derived from the highest and lowest of these reimbursement rates. Every attempt was made to include only those professions which provide attendant services in these figures, so the reimbursement rates for health personnel such as registered nurses and the various types of therapists were excluded from the range. 143 Average Hourly Wage 0 Average hourly pay for attendants was determined differently for each type of provider. For individual providers and government employees, if the administrator could answer the question (") directly, that answer was used. If the answer was given in terms of a salary range, then the lower end of the range was used. If the salary was in terms of days, e.g. $20/day, then that salary figure was divided by the number of hours to be worked. The administrators of 26 contract programs were able to state what the average wage rates were in their programs. In another 37 cases, however, administrators could only give the wages for specific types of workers, such as home health aides and housekeepers. Again, excluding health personnel such as O R.N.s and therapists, the average of the lowest and highest of these rates was used, as above. Average Number of Benefits U Average number of benefits provided was obtained by giving one point for each of seven benefits the program actually provides and averaging the sum across all the programs within a L.) particular provider type. Disability Groups Served and Eligible Although the questionnaire asked respondents to indicate whether they served people with developmental disabilities using three different definitions, it became clear that there were wide discrepancies in the use of the term. In order to decrease the confusion, only four categories for disability were used: 1) physical disability, 2) brain injury, 3) mental illness, and 4) 144 mental retardation. Expenditure Per Client Expenditure per client per year was computed by dividing expenditures by the number of clients. For all programs, the expenditure and client figures used were parallel. Expenditures and clients for attendant services only (n=91) were preferred. If one or the other or both were not available, then expenditures and clients in the total program were used (n=30). However, if the total program included home-delivered meals or adult day care. Then expenditure per client was not computed. Funding Sources If a program received funding from a federal program and combined that with state or local funds, that program was counted only as a federally-funded program under the appropriate federal Title or mix of Titles. Graduated Shared Cost Formula Whether programs employed a graduated shared cost formula was determined directly from the answer to that question in the survey. Hours Services Available Hours Services Available was defined by whether programs offered services 24 hours a day, 7 days a week as determined by answers to two questions in the survey instrument. Income Eligibility and Poverty Level Income eligibility was determined by asking for the highest amount an individual could earn and still be eligible for the 145 program, taking into account graduated shared cost formulas and deductions from income for disability-related and other expenses. It was difficult for many administrators to answer this questions with precision. Poverty level was determined by one of two criteria: 1) the income eligibility level stated was at or below the poverty level as outlined by the U.S. Department of Health and Human Services (1985), and 2) no income eligibility level was stated but the program only accepted people who received or were eligible for SSI, SSDI or Medicaid. Independent Living Score A program's independent living score was computed by giving a score of 1 for a positive answer to the following 10 items: 1) no medical supervision, 2) offers attendant services with catheterization, 3) service limit of 20 hours/week or more, 4) services available 24 hours a day, 7 days a week, 5) income limit greater than or equal to 150% of the poverty level for a single person, 6) independent providers allowed, 7) user hires and fires the attendant, 8) user pays the attendant, 9) user trains the attendant, and 10) user participates in deciding the number of hours and type of services she or he requires. The higher the score, the greater the conformity to the Independent Living model of service delivery. Maximum Service Amount Allowed Programs stated the maximum amount of services allowed in two ways: 1) Number of hours per week, month or year, or 2) Monthly financial allowance or ceiling. If limits were defined 146 by numbers of hours per month or year, these were converted to number of hours per week on the assumption that the hours were equally spread - but there were programs that allowed for fluctuations within a year or over a month and did not cut off service. The monthly allowances or ceilings were converted into number of hours allowed per week by dividing by the average hourly wage for all types of attendants ($4.41/hour) and further dividing by 4 to get a weekly figure. Programs that gave the maximum amount of service allowed in terms of visits were not included because visits could be much less or much more than an hour long. Once all the service limits were converted to hours, programs could then be divided into those which allowed for 20 )1 hours or more of service per week and those which did not - a measure of the severity of the disabilities of the program users. Medical Supervision Required Whether medical supervision was required was determined by adding together those programs that required supervision of all )1 services and those requiring medical supervision of only some services. Need for Attendant Services Need for attendant services was defined by results from the Home Care Supplement to the 1979-1980 National Health Interview Survey in which respondents were asked whether they received or needed the assistance of another person in performing seven basic physical activities. The physical activities included: walking, going outside, bathing, dressing, using the toilet, getting in or out of bed or chair, and eating. The percentage of people in 147 each age group needing help with one or more activities was then used to estimate the number needing help, utilizing 1985 population census data. Purpose of Program Purpose was split into three categories by combining answers to the question on purpose: 1) Prevention of institutionalization and enabling people to stay in their own homes were combined, 2) Allowing people to work and still receive financial aid for attendant services and financial aid to employed or employable were combined, and 3) cost containment. Relatives Allowed as Attendants Whether relatives were allowed to be paid attendants was determined by whether one of the four closed-ended questions or the open-ended question regarding circumstances under which relatives can be paid were answered. If none of these questions was answered in the affirmative, then it was deduced that relatives were not paid to be attendants by the program. Services Offered Services offered was determined by answers to 33 close-ended questions in the survey instrument. Administrators were asked to state what existed in the regulations, not what custom allowed. In addition, a core of services was defined in order to determine if a minimum set of services was being delivered by any particular program. The personal maintenance/hygiene services core included feeding, bathing, dressing, bowel and bladder care, oral hygiene, and grooming and transfers. The household 148 maintenance core included light cleaning, laundry, shopping, meal preparation and clean-up. Attendant services were defined as programs that combined both personal maintenance/ hygiene and household maintenance services. In addition, personal maintenance and attendant services were described as being offered with or without catheter assistance. Total Expenditures Total attendant program expenditures were based on answers to one of two questions. If the administrator could state the total expenditure just on attendant services, that was the figure used (n=110). If the attendant service expenditures could not be broken out from total program expenditures, then total program expenditures were used (n=30). However, if adult day care and/or home-delivered meals were part of the total program, then the expenditure figure was not used at all because it would greatly inflate program costs. Also, if medically oriented services were included in the total program expenditure figure, that figure was not used. Total Number of Clients Total number of clients was defined by the answer to two questions. If an administrator could state the total number of clients receiving just attendant services, that was the figure used (n=104). If attendant services users could not be broken out from the rest of the program clients, the number of clients in the total program was used (which was the case for 20% of the programs, n=28). However, if the total program included adult day care and/or home-delivered meals, the client figure was not 149 used at all because it would have greatly inflated the number of attendant users, particularly in Title III programs. The client figures for programs that could not separate attendant service users from the regular Medicaid program was also not used. Type of Provider Type of provider was defined by answers to the questions regarding type of provider in the survey instrument which had three categories: 1) self-employed individuals, 2) contract agencies, and 3) local government unit staff. Year Program Implemented The year program was implemented was based directly on answers to that question. Suggestions for Further Research Following are questions for further research, answers to which would help to fill out the picture of attendant service delivery in the United States: 1) How many people are in need of publicly-funded attendant services? a) How many people could leave nursing homes and institutions if adequate attendant services were available in their home community? b) To what extent do people of all ages needing personal assistance rely on unpaid/volunteer labor of family and friends? 2) Are consumers in more independent living-oriented programs more satisfied with personal assistance services they receive than people in more medically 150 oriented programs? 3) How do unit costs (e.g. cost per service hour) compare across the different personal assistance programs? 4) What is the impact of personal assistance services on the development of children and teenagers? 5) To what degree do personal assistance users participate in personal assistance program policy determination, administration and staff training? 6) What are all the other disability-related costs personal assistance users have to bear in order to function independently in the community, e.g. equipment replacement and repair, housing and clothing adaptations, medical insurance (if available), transportation? 7) How do personal assistant services vary for people with mental, intellectual or physical disabilities? Can services be adequately combined? 8) How do personal assistance programs compare in terms of quality? 9) How can outreach to potential personal assistance users be made more effective? 10) What other personal assistance services could people who are disabled use, e.g. emergency backups, child maintenance assistance? 11) What could contribute to increasing provider satis faction and decreasing turnover? 12) How would providing personal assistants on the job 151 contribute to increasing the employment of disabled people? 13) Are people who rely on the assistance of volunteers (family and friends) less independent? less productive? 14) What is the economic and emotional impact on families who provide the bulk of attendant services for the family member who is disabled? D J 152 APPENDIX C SOURCES OF ATTENDANT SERVICES IN THE UNITED STATES Alabama Community Alternative Services Alabama Medicaid 2500 Fairlane Dr. Montgomery, AL, 36130 Community Services Program (Title III) Commission on Aging 502 Washington Ave. Montgomery, AL, 36130 Homebound Program Division of Rehabilitation & Crippled Children's Services 2129 E. South Blvd. P.O. Box 11586 Montgomery, AL, 36111-0586 Optional Supplement of SSI Department of Pensions and Securities 64 N. Union St. Montgomery, AL, 36104 Alaska Homemaker Program Department of Health and Social Services Pouch H-05 Juneau, AK, 99811 Title III Services Older Alaskans Commission Pouch-C, Mail Stop 0209 Juneau, AK, 99811 Arizona Pima County Community Services System Aging and Medical Services Department 2250 N. Craycroft Tucson, AZ, 85712 Arkansas In-Home Services Program Department of Human Services Donaghey Building 7th and Main Little Rock,AR, 72201 j 153 Spinal Cord Commission Program Spinal Cord Commission 2020 W. 3rd, Ste. #2-H Little Rock, AR, 72205 Title III In-Home Services Program Central Arkansas Area Agency on Aging 706 W. 4th, P.O. Box 5988 North Little Rock, AR, 72119 California Community Services Program--Title III Department of Aging 1020 19th St. Sacramento, CA, 95814 In-Home Medical Care Waiver Department of Health Services 714 P St. Rm. #1640 Sacramento, CA, 95814 In-Home Supportive Services Department of Social Services 744 P. St., M-S 9536 Sacramento, CA, 95814 Multipurpose Senior Services Program (Frail Elderly Waiver) Department of Aging 1600 9th St. Rm. #456 Sacramento,CA, 95814 Colorado Home- and Community-Based Service Program Department of Social Services 1575 Sherman Ave. Denver, CO, 80203 Home Care Allowance Department of Social Services 1575 Sherman St. Rm. #803 Denver, CO, 80203 Medicaid Home Health Agency Services Bureau of Medical Services Department of Social Services 1575 Sherman, Room 803 Denver, CO, 80203 Supportive Services Division of Aging and Adult Services 1575 Sherman St. Rm. #803 Denver, CO, 80203 154 Connecticut Essential Services Programs Department of Human Resources 110 Bartholomew Ave. Hartford, CT, 06106 Fairfield County Home- and Community-Based Waiver Department of Income Maintenance 110 Bartholomew Ave. Hartford, CT, 06106 Medicaid Home Health Care Services Department of Income Maintenance 110 Bartholomew Ave. Hartford, CT, 06106 Personal Care Assistance Program Department of Human Resources 110 Bartholomew Ave. Hartford, CT, 06106 Promotion of Independent Living Department on Aging 175 Main St. Hartford, CT, 06106 Delaware Homemaker Program Division of Economic Services Delaware State Hospital P.O. Box 906 New Castle, DE, 19720 Medical Assistance Program Delaware State Hospital, Biggs Bldg. New Castle, DE, 19720 Florida Community Care for Disabled Adults Department of Health and Rehabilitative Services 1317 Winewood Blvd. Bldg 2, Ste. #328 Tallahassee, FL, 32301 Community Care for the Elderly Health and Rehabilitative Services 1321 Winewood Blvd. Tallahassee, FL, 32301 Elderly Waiver/Physically Disabled and Infirm Elderly Health and Rehabilitative Services 1317 Winewood Blvd. Tallahassee, FL, 32301 155 Home Care for the Elderly Department of Health and Rehabilitative Services 1317 Winewood Blvd., Building 2 Tallahassee, FL, 32301 Title III Program Department of Health and Rehabilitative Services 1317 Winewood Blvd. Bldg 2, Rm. #321 Tallahassee, FL, 32301 r. Georgia 1 Community Care for the Elderly Office of Aging 878 Peachtree St. N.E. Atlanta, GA, 30309 Homemaker Program Department of Human Resources 878 Peachtree St., N.E. Atlanta, GA, 30309 Title III In-Home Services Program Office of Aging 878 Peachtree St., N.E. Atlanta, GA, 30309 Hawaii Chore Services Program Department of Social Services and Housing P.O. Box 339 Honolulu, HI, 96809 Nursing Home Without Walls Community Long-Term Care Services Department of Social Services and Housing 33 S. King St., Rm. #223 Honolulu, HI, 96813 Title III Program Area Agency on Aging 650 S. King St. Honolulu, HI, 96813 Idaho Homemaker Program Idaho Office for the Elderly State House Boise, ID, 83720 Special Targeted Home- and Community-Based Service Waiver Department of Health and Welfare 450 W. State, 6th Floor Boise, ID, 83720 156 Statewide Home- and Community-Based Care (Personal Care Waiver) Department of Health and Welfare 450 W. State, 6th Floor Boise, ID, 83720 Illinois Community Care Program Illinois Department on Aging 421 E. Capitol Ave. Springfield, IL, 62706 Home Services Program Department of Rehabilitation Services 622 E. Washington Springfield, IL, 62705 Indiana Home Care Services and Aging Programs Department on Aging and Community Services 251 N. Illinois St., Capitol Center Indianapolis, IN, 46204 Medicaid Home Health Program Department of Public Welfare 100 N. Senate Indianapolis, IN, 46204 Medicaid--Waivered Services Department of Public Welfare 100 N. Senate Indianapolis, IN, 46204 Title III--In-Home Services Department on Aging and Community Services 251 N. Illinois St., Capitol Center Indianapolis, IN, 46204 Iowa Homemaker Health Aid Iowa Department of Health Lucas State Office Building Des Moines, IA, 50319 In-Home Health Program Department of Human Services Hoover Building, 5th Floor Des Moines, IA, 50319 Kansas Alternate Care Program Department of Social and Rehabilitation Services 1st Floor Biddle Bldg. 2700 W. 6th Topeka, KS, 66606 157 Home- and Community-Based Services Waiver Program Department of Social and Rehabilitation Services 1st Floor Biddle Bldg. 2700 W. 6th Topeka, KS, 66606 Homemaker Program Department of Social and Rehabilitation Services 1st Floor Biddle Bldg. 2700 W. 6th Topeka, KS, 66606 Title III Program Department on Aging 610 W. 10th Topeka, KS, 66612 Kentucky Bluegrass Home- and Community-Based Service Waiver Division of Medical Assistance Cabinet of Human Resources 275 E. Main St. Frankfort, KY, 40601 Home Care Program (60+) Division of Aging Services Cabinet of Human Resources Building Frankfort, KY, 40621 Personal Care Attendant Program Department of Social Services Cabinet of Human Resources Building Frankfort, KY, 40621 Louisiana In-Home Services Program (Title III) Governor's Office of Elderly Affairs P.O. Box 80374 Baton Rouge, LA, 70898 Maine Attendants for Employed People Alpha I 169 Ocean St. S. Portland, ME, Attendants for Unemployed People Alpha I 169 Ocean St. S. Portland, ME, Home- and Community-Based Waiver Program Department of Human Services State House Station II Augusta, ME, 04333 158 Homebased Care Program Department of Human Services State House Station II Augusta, ME, 04333 Support Services Bureau of Social Services 221 State St. Augusta, ME, 04333 Maryland Attendant Care Program Division of Vocational Rehabilitation 200 W. Baltimore St. Baltimore, MD, 21201 Gateway II Office on Aging 301 W. Preston, Rm. #1004 Baltimore, MD, 21202 In-Home Aide Services Department of Human Resources 300 W. Preston Rm. #403 Baltimore, MD, 21201 Personal Care Program Department of Health and Mental Hygiene 300 W. Preston Rm. #206 Baltimore, MD, 21201 Title III In-Home Services Program Office on Aging 301 W. Preston, Rm. #1004 Baltimore, MD, 21201 Massachusetts Home Care Program Executive Office of Elder Affairs 38 Chauncy St. Boston, MA, 02111 Home Care Waiver Program Department of Public Welfare Medicaid Division Rm. #740 600 Washington St. Boston, MA, 02111 Independent Living Personal Care Program Medicaid--Department of Public Welfare 600 Washington St. Rm. #740 Boston, MA, 02111 159 In-Home Services for the Blind Commission for the Blind 110 Tremont St. Boston, MA, 02108 Personal Care Program Massachusetts Rehabilitation Commission Statler Office Building Boston, MA, 02116 Title III Executive Office of Elder Affairs 38 Chauncy St. Boston, MA, 02111 Michigan Alternative Care Program Office of Services to the Aging P.O. Box 30026 Lansing, MI, 48909 Home Help Program Department of Social Services Commerce Bldg Ste. #710 300 S. Capitol Lansing, MI, 48912 Model Home- and Community-Based Services Medicaid Policy and Reimbursement Division P.O. Box 30037 Lansing, MI, 48909 Minnesota Personal Care Services Program Department of Human Services Space Center 444 Lafayette Rd. St. Paul, MN, 55101 Title III--In-Home Services Program Board on Aging 204 Metro Square 7th and Robert St. Paul, MN, 55101 Mississippi Homemaker Program Council on Aging 301 West Pearl St. Jackson, MS, 39201 Independent Living--Attendant Care Pilot Program State Department of Rehabilitation Services P.O. Box 1698 Jackson, MS, 39215-1698 )1 160 Missouri Disabled Children's Home- and Community-Based Waiver Department of Social Services 308 E. High St. Jefferson City, MO, 65101 Home- and Community-Based Waiver for the Aged Department of Social Services 308 E. High St. Jefferson City, MO, 65101 Personal Care Assistance Program Division of Vocational. Rehabilitation 2401 E. McCarty Jefferson City, MO, 65101 Personal Care Services Department of Social Services 308 E. High St. Jefferson City, MO, 65101 Title III--Chore Homemaker Department of Social Services P.O. Box 1337 Jefferson City, MO, 65102 Title XX--SSBG In-Home Service Program Division on Aging Broadway State Office Building, P.O. Box 88 Jefferson City, MO, 65103 Montana Home Attendant Program Department of Social and Rehabilitation Services Box 4210 Helena, MT, 59601 Home Attendant/Chore Program Department of Social and Rehabilitation Services Box 4210 Helena, MT, 59601 Home- and Community-Based Services Program Department of Social and Rehabilitation Services 111 Sanders Helena, MT, 59601 Personal Care Attendant Program Department of Social and Rehabilitation Services 111 Sanders Helena, MT, 59601 161 Nebraska Chore Services Program Department of Social Services Box 95026 Lincoln, NE, 68509 Disabled Persons & Family Support Program Department of Social Services Box 95026 Lincoln, NE, 68509 Long-Term Care Program Department of Social Services Box 95026 Lincoln, NE, 68509 Title III In-Home Services Program Department on Aging Box 95044 Lincoln, NE, 68509 Nevada Aging Services Department of Human Resources 505 E. King St. Rm. #101 Carson City, NV, 89710 Attendant Care Program Northern Nevada CIL 190 E. Liberty Reno, NV, 89501 Homemaker Services Welfare Division 251 Jeannell Dr. Carson City, NV, 89710 Medicaid Home Health Program Department of Human Resources 251 Jeannell Dr. Carson City, NV, 89710 New Hampshire Adult Services Department of Human Services Division of Welfare Hazen Dr. Concord, NH, 03301 Home- and Community-Based Care for the Elderly and Chronically Ill Office of Medical Services Hazen Dr. Concord, NH, 03301 162 Personal Care Attendant Program Office of Medical Services Hazen Dr. Concord, NH, 03301 Title III-B In-Home Services State Council on Aging 105 Loudon Rd. Concord, NH, 03301 New Jersey Community Care Program for Elderly and Disabled Division of Medical Assistance and Health Services CN 715 Trenton, NJ, 08625 In-Home Services Program (Title III) Division on Aging 363 W. State St. Trenton, NJ, 08625 Model Waiver (Home- and Community-Based Services for Blind or Disabled Children and Adults) Division of Medical Assistance and Health Services CN 715 Trenton, NJ, 08625 Personal Attendant Program Department of Human Services 222 South Warren Street, 2nd Floor CN700 Trenton, NJ, 08625 Personal Care Assistant Program Division of Medical Assistance and Health Services CN 715 Trenton, NJ, 08625 New Mexico Coordinated Community In-Home Care for the Aged and Disabled Human Service Department P.O. Box 2348 PERA Bldg. Rm. #418 Santa Fe, NM, 87504 Critical In-Home Care Program Department of Social Services P.O. Box 2348 PERA Bldg. Rm. #516 Santa Fe, NM, 87504 Homemaker Program--Title XX Social Services Division P.O. Box 2348 Santa Fe, NM, 87504-2348 163 Title III--In-Home Services State Agency on Aging 2214 East Palace Ave. Santa Fe, NM, 87501 Waiver for Medically Fragile Children Human Service Department P.O. Box 2348 PERA Bldg. Rm. #418 Santa Fe, NM, 87504 New York Disabled Children's Program Office of MR & DD 44 Holland Ave. Albany, NY, 12229 Long-Term Care Project Division of Medical Assistance 40 N. Pearl St. Albany, NY, 12243 Personal Care Services Department of Social Services 1 Commerce Plaza Albany, NY, 12237 Respite Demonstration Project Department of Social Services 40 N. Pearl St. Albany, NY, 12243 Title III-B and Community Services for the Elderly Office for the Aging Empire State Plaza Bldg 2, 4th Floor Albany, NY, 12243 Title XX Program Department of Social Services 40 N. Pearl St., 9th Floor Albany, NY, 12243 North Carolina Attendant Care Program Metrolina Independent Living Center 1012 S. Kings Drive, Suite G-2 Charlotte, NC, 28283 Community Alternatives Program Division of Medical Assistance 1985 Umstead Dr. Raleigh, NC, 27603 --••••11111 164 Homemaker/Chore Program (Title XX) Division of Social Services 325 N. Salisbury St. Raleigh, NC, 27611 In-Home Services Program (Title III) Division on Aging 1985 Umstead Dr. Raleigh, NC, 27603 North Dakota Personal/Attendant Care Program Department of Human Services Capitol Building Bismarck, ND, 58505 Ohio Assistance for Independent Living Department on Aging 51 W. Broad St., 9th Floor Columbus, OH, 43266-0501 Homemaker-Home Health Aide Demonstration Project (Title XIX Waiver) Department of Human Services 30 E. Broad St. Columbus, OH, 43215 Passport Department of Human Services 30 E. Broad St. Columbus, OH, 43215 Personal Care Assistance Program Rehabilitation Services Commission 4656 Heaton Rd. Columbus, OH, 43229 Title III--In-Home Services Department on Aging 50 West Broad St. Columbus, OH, 43266-0501 Title XX--In-Home Services Department of Human Services 30 E. Broad St., 30th Floor Columbus, OH, 43125 Oklahoma Home Maintenance Aide Program Department of Human Services P. O. Box 25352 Oklahoma City, OK, 73125 165 Non-Technical Medical Care Department of Human Services 312 N.E. 28th Oklahoma City, OK, 73125 Title III In-Home Services Program Department of Human Services P.O. Box 25352 Oklahoma City, OK, 73125 Oregon In-Home Services Senior Services Division 313 Public Service Bldg Salem, OR, 97310 Pennsylvania Attendant Care Demonstration Program Department of Public Welfare Rm. #529, Health and Welfare Building Harrisburg, PA, 17120 Attendant Care Services for Older Adults Department of Aging 231 State St. Harrisburg, PA, 17101 Community-Based Services Department of Aging 231 State St. Harrisburg, PA, 17101 Rhode Island Homemaker Program Department of Human Services 600 New London Ave. Cranston, RI, 02920 Independent Living Rehabilitation Program Vocational Rehabilitation 40 Fountain St. Providence, RI, 02903 In-Home Services Program Department of Elderly Affairs 79 Washington St. Providence, RI, 02903 Medicaid Waiver Program Division of Medical Services 600 New London Cranston, RI, 02920 Pi JI Pi 166 South Carolina Community Service Program (Title III) Commission on Aging 915 Main St. Columbia, SC, 29201 Home- and Community-Based Waivered Services Program Health and Human Services Finance Commission P. 0. Box 8206 Columbia, SC, 29202-8206 SSBG--Homemaker Program State Health and Human Services Finance Commission P.O. Box 8206 Columbia, SC, 29202 South Dakota Attendant Care Program Adult Services and Aging 700 N. Illinois St. Pierre, SD, Attendant Care Program Prairie Freedom Center for Disabled Independence 800 West Ave., North Sioux Falls, SD, 57104 Homemaker/Home Health Aide Program Adult Services and Aging 700 N. Illinois St. Pierre, SD, Tennessee Title III--In-Home Services Commission on Aging Tennessee Bldg, Ste. #710 535 Church St. Nashville, TN, 37219 Texas Family Care Program Department of Human Resources Mail Code 543-W, P.O. Box 2960 Austin, TX, 78769 1915-C Model Waiver Department of Human Resources P.O. Box 2960, Mail Code 540 W. Austin, TX, 78769 167 Primary Home Care Program Department of Human Resources Mail Code 543-W, P.O. Box 2960 Austin, TX, 78769 Title III--In-Home Services Department on Aging P.O. Box 12786, Capitol Station Austin, TX, 78711 Utah ) Homemaker--Personal Care Program Division of Aging and Adult Services 105 W. North Temple Salt Lake City, UT, 84103 Personal Attendant Care Program Department of Social Services 150 W. North Temple Ste. #234 Salt Lake City, UT, 84103 2176 Waiver---Home- and Community-Based Services Program Department of Health 150 W. North Temple P.O. Box 45500 Salt Lake City, UT, 84145 Vermont Participant Directed Attendant Care Vocational Rehabilitation Division Osgood Guilding Waterbury, VT, 05676 ) Personal Services Program Division of Social Services 103 S. Main St. Waterbury, VT, 05676 Virginia Adult Services Program--Homebased Services Department of Social Services 8007 Discovery Dr. Richmond, VA, 23288 Homemaker/Personal Care, Home Health Aide, or Companion Program (Title III) Department for the Aging 101 N. 14th St., 18th Floor Richmond, VA, 23219 In-Home Personal Care Services Department of Medical Assistance Services 109 Governor St. Richmond, VA, 23219 168 Washington Chore Services Program Department of Social and Health Services Office Building 43-G Olympia, WA, 98504 Comprehensive Options Program Entry System Bureau of Aging and Adult Services Office Building, 43-G Olympia, WA, 98504 West Virginia Chore Services Program Deptartment of Human Services 1900 Washington St. E. Charleston, WV, 25305 Home- and Community-Based Services Medicaid Waiver for the Elderly and Disabled Department of Human Services 1900 Washington St., E, Bldg. 6 Charleston, WV, 25305 Wisconsin Community Options Program Office of Program Initiative 1 W. Wilson Rm. #314 Madison, WI, 53707 Family Support Program Developmental Disabilities Office P.O. Box 7851 Madison, WI, 53707 Katie Beckett Waiver Program Department of Health and Human Services P.O. Box 309 1 W. Wilson St. Madison, WI, 53701 Medicaid Home Health Program Department of Health and Human Services P.O. Box 309 1 W. Wilson St. Madison, WI, 53701 Respite Care Project Division of Community Services Office on Aging Room 480, One W. Wilson Street Madison, WI, 53707 169 Supportive Home Care--Title XX Office of Program Initiative Division of Community Services 1 W. Wilson St. Rm. #314 Madison, WI, 53707 ) Wyoming Community-Based In-Home Services Demonstration Contracts Commission on Aging Hathaway Building Cheyenne, WY, 82002 Homemaker Program - Title XX Division of Public Assistance and Social Services Hathaway Bldg., Rm. #388 Cheyenne, WY, 82002 Washington, D.C. Home Care Services Program Department of Human Services 19th and Massachusetts Ave., S.E. Bldg 16, D.0 General Hospital Washington, DC, 20003 ) In-Home Support Services Department of Human Services Randall Bldg, 1st and "I" St., S.W. Washington, DC, 20024 Title III In-Home Services Program Office on Aging 1424 K. St. N.W., 2nd Floor Washington, DC, 20005 ) ) 171 APPENDIX D SURVEY INSTRUMENT (QUESTIONNAIRE) )1 INUI