IL NET an ILRU/NCIL National Training and Technical Assistance Project Expanding the Power of the Independent Living Movement NOTHING ABOUT YOUTH WITHOUT YOUTH A National Conference Participant's Manual May 16-17, 2002 Contributors to the training materials: Marissa Johnson Dellon Lewis Curtis Richards Sarah Triano Darrell Lynn Jones Raweewan Buppapong Kristy Langbehn Carri George Richard Petty Dawn Heinsohn (c) 2002 IL NET, an ILRU/NCIL Training and Technical Assistance Project ILRU Program NCIL 2323 S. Shepherd Street 1916 Wilson Boulevard Suite 1000 Suite 209 Houston, Texas 77019 Arlington, Virginia 22201 713-520-0232 (V) 703-525-3406 (V) 713-520-5136 (TTY) 703-525-4153 (TTY) 713-520-5785 (FAX) 703-525-3409 (FAX) ilru@ilru.org 1-877-525-3400 http://www.ilru.org (V/TTY - toll free) ncil@ncil.org http://www.ncil.org Permission is granted for duplication of any portion of this manual, providing that the following credit is given to the project: Developed as part of the IL NET: an ILRU/NCIL National Training and Technical Assistance Project. IL NET is funded through a special provisions cooperative agreement with the U.S. Department of Education, Rehabilitation Services Administration, Agreement No. H132B99002. Nothing About Youth Without Youth Salt Lake City, UT May 16-17, 2002 Participant's Manual Table of Contents Agenda About the Trainers List of Trainers and IL NET Staff About ILRU About NCIL About IL NET Learning Objectives Context of Collaboration Disability Culture Emerging Disability Policy Framework Iowa Law Review Youth Leadership Forum National Youth Leadership Network YIELD THE POWER Project Presidential Task Force on Employment of Adults with Disabilities Youth Focus Group Questionnaire About the Trainers Marissa Johnson, 25, is currently the Co-Chair of the National Youth Leadership Network, an organization dedicated to advancing the next generation of disability leaders and the host of the National Leadership Conference for Youth with Disabilities. Marissa is also on committees for the National Center on Secondary Education and Transition, the National Collaborative on Workforce and Disability/Youth and is on the Youth Advisory Council for the Presidential Task Force on Employment of Adults with Disabilities. In addition to her national involvement, Marissa is a Disability Rights Advocate establishing youth programs at The Whole Person, a CIL in Kansas City, MO. Dellon Lewis, a 20-year old man with a physical disability, is the Youth Leader/Organizer for the YIELD THE POWER Project at Access Living of Metropolitan Chicago. Dellon is a National Honors Society graduate from Jesse Spalding High School located in Chicago. He was selected to participate in the citywide high school mock trial at the Richard M. Daley center in Chicago. Dellon was a participant in a nationwide organization of wheelchair basketball and other extra curricular activities while a student at Spalding High. In 1995, he won first place in the national competition of poetry of Martin Luther King, Jr. and his entry was placed in the Martin Luther King, Jr. Library in Montgomery, Alabama. He received an award for outstanding advocacy and mentorship at Pyramid Career Institute in 2001, and graduated that year for computer driven customer service. Curtis Richards is the former Deputy Assistant Secretary for the Office of Special Education and Rehabilitative Services under Judy Heumann where he was involved in helping shape both the funding and program of the first national Youth Leadership Conference. Prior to this while working for the California Department of Rehabilitation he helped secure the funding to launch the first Youth Leadership Forum in the country. He served as a camp counselor and mentor to several young people with disabilities (including Sarah Triano) at that Forum. Curtis also served as co-chair of the presidential Task Force's Subcommittee on Youth, in which he lead efforts to do cross agency policy work to help address employment issues for young adults with disabilities, including leadership development. Curtis now has his own consulting firm and is a key consultant with the National Collaborative on Workforce and Disability/Youth, a Department of Labor funded technical assistance center. Sarah Triano is a 27 year-old young woman with a non-apparent disability, and one of the leading youth activists in the country. She is a co-founding member of the UIC Disabled Students Union and the National Disabled Students Union (NDSU), and also serves on the Young Activists' Task Force of the American Association of People with Disabilities. Sarah is currently a graduate student at the University of Illinois Chicago pursuing her Doctoral degree in Disability Studies, while also working as the Youth/Education Team Leader and YIELD THE POWER Project Director at Access Living of Metropolitan Chicago. She was one of the original delegates to the first annual California Youth Leadership Forum for High School Students with Disabilities in 1992. She volunteered as a counselor at this Forum from 1993-1998, and was actively involved with the Office of Disability Employment Policy (formerly known as the President's Committee on Employment of People with Disabilities) in the replication of this model youth leadership forum throughout the United States. After participating in the 1998 National Council on Disability's Second Annual Youth Leadership Development Conference in Washington, DC., Sarah contracted with NCD to produce a policy report on the issues facing minority-group members with disabilities in the U.S. entitled, "Lift Every Voice: Modernizing Disability Policies and Programs to Serve a Diverse Nation," which was released on July 26, 1999. Trainers Marissa Johnson Co-Chair, National Youth Leadership Network Disability Rights Advocate, The Whole Person 301 E. Armour Blvd., Suite 430 Kansas City, Missouri 64111-1252 816-561-0304 rissamj@hotmail.com Dellon Lewis Youth Leader/Organizer YIELD THE POWER Project Access Living of Metropolitan Chicago 614 W. Roosevelt Road Chicago, Illinois 60607 312-253-7000 (voice) 312-253-0332 (TTY) 312-253-7001 (FAX) dlewis@accessliving.org Curtis Richards Consultant The Advocrat Group 3719 Yuma Street, NW Washington, DC 20016-2211 202-966-7659 (voice) 202-329-4149 (cell) Advocrat@aol.com Sarah Triano Youth and Education Team Leader YIELD THE POWER Project Director Co-Founder of the National Disabled Students Union Access Living of Metropolitan Chicago 614 West Roosevelt Road Chicago, Illinois 60607 312-253-7000 (voice) 312-253-0332 (TTY) 312-253-7001 (FAX) sarah@accessliving.org IL NET STAFF ILRU Lex Frieden Laurie Gerken Redd Executive Director Administrative Coordinator lfrieden@ilru.org lredd@ilru.org Richard Petty Carri George Program Director Publications Coordinator richard.petty@bcm.tmc.edu cgeorge@ilru.org Laurel Richards Dawn Heinsohn Training Director Materials Production Specialist lrichards@ilru.org heinsohn@ilru.org ILRU Program 2323 S. Shepherd Suite 1000 Houston, TX 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (FAX) ilru@ilru.org http://www.ilru.org NCIL Anne-Marie Hughey Executive Director hughey@ncil.org NCIL 1916 Wilson Boulevard Suite 209 Arlington, VA 22201 703-525-3406 (V) 703-525-4153 (TTY) 703-525-3409 (FAX) 1-877-525-3400 (V/TTY - toll free) ncil@ncil.org http://www.ncil.org Kristy Langbehn Project Logistics Coordinator kristy@ncil.org Darrell Lynn Jones Training Specialist darrell@ncil.org Raweewan Buppapong Project Assistant toony@ncil.org ABOUT ILRU The Independent Living Research Utilization (ILRU) Program was established in 1977 to serve as a national center for information, training, research, and technical assistance for independent living. In the mid-1980's, it began conducting management training programs for executive directors and middle managers of independent living centers in the U.S. ILRU has developed an extensive set of resource materials on various aspects of independent living, including a comprehensive directory of programs providing independent living services in the U.S. and Canada. ILRU is a program of TIRR, a nationally recognized, free-standing rehabilitation facility for persons with physical disabilities. TIRR is part of TIRR Systems, a not-for-profit corporation dedicated to providing a continuum of services to individuals with disabilities. Since 1959, TIRR has provided patient care, education, and research to promote the integration of people with physical and cognitive disabilities into all aspects of community living. ABOUT NCIL Founded in 1982, the National Council on Independent Living is a membership organization representing independent living centers and individuals with disabilities. NCIL has been instrumental in efforts to standardize requirements for consumer control in management and delivery of services provided through federally-funded independent living centers. Until 1992, NCIL's efforts to foster consumer control and direction in independent living services through changes in federal legislation and regulations were coordinated through an extensive network and involvement of volunteers from independent living centers and other organizations around the country. Since 1992, NCIL has had a national office in Arlington, Virginia, just minutes by subway or car from the major centers of government in Washington, D.C. While NCIL continues to rely on the commitment and dedication of volunteers from around the country, the establishment of a national office with staff and other resources has strengthened its capacity to serve as the voice for independent living in matters of critical importance in eliminating discrimination and unequal treatment based on disability. Today, NCIL is a strong voice for independent living in our nation's capital. With your participation, NCIL can deliver the message of independent living to even more people who are charged with the important responsibility of making laws and creating programs designed to assure equal rights for all. ABOUT THE IL NET This training program is sponsored by the IL NET, a collaborative project of the Independent Living Research Utilization (ILRU) of Houston and the National Council on Independent Living (NCIL). The IL NET is a national training and technical assistance project working to strengthen the independent living movement by supporting Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs). IL NET activities include workshops, national teleconferences, technical assistance, on-line information, training materials, fact sheets, and other resource materials on operating, managing, and evaluating centers and SILCs. The mission of the IL NET is to assist in building strong and effective CILs and SILCs which are led and staffed by people who practice the independent living philosophy. The IL NET operates with these objectives: ? Assist CILs and SILCs in managing effective organizations by providing a continuum of information, training, and technical assistance. ? Assist CILs and SILCs to become strong community advocates/change agents by providing a continuum of information, training, and technical assistance. ? Assist CILs and SILCs to develop strong, consumer-responsive services by providing a continuum of information, training, and technical assistance. NOTHING ABOUT YOUTH WITHOUT YOUTH Learning Objectives Participants will: 1) Gain an historical perspective and national context for youth leadership development; 2) Identify how to incorporate independent living philosophy into youth programs; 3) Learn the secrets of success of model youth leadership programs; 4) Learn how to integrate the best from mainstream youth leadership programs with those designed specifically for youth with disabilities; 5) Acquire tools and strategies to create and operate local and/or statewide programs. Context for Collaboration In a tumultuous swiftly changing environment, in a world of multiple colliding systems, the hierarchial position of leaders within their own system is of limited value, because some of the most critically important tasks require lateral leadership - cross boundry leadership - involving groups over whom they have no control Source: On Leadership, John Gardner Elements of Reform * Collaborative Decision Making * Public Engagement * Parent Consumer and Neighborhood Participation * Accountability for Results Stages of Collaboration * Getting Together * Building Trust and Ownership * Strategic Planning * Taking Action * Deepening and Broadening the Work Why NCWD/ Youth is needed *Youth with disabilities, especially those with significant disabilities, experience particularly poor education and employment outcomes. *One third of students with disabilities do not finish high school. * Only one third of young people with disabilities who need job training receive it. * Only a quarter of young people who need life skills training, tutoring, interpreting or personal counseling receive these services. * More than half of all young people with emotional disturbances are arrested at least once within three to five years of exiting school. *Young people with disabilities have significantly lower rates of participation in post secondary education. * Only 26 percent of working age adults with disabilities have a job or their own business. Collaborative Members * Center for Workforce Development at the Institute for Educational Leadership (www.iel.org) * Disability Studies & Services Center at the Academy for Educational Development (www.aed .orglctrdssc) * National Center on Secondary Education & Transition at the University of Minnesota (www.ici.umn.edulncset) * TransCen, Inc. (vvww.transcen.org) * InfoUse (www.infouse.com) * Goodwill Industries International, Inc. (www.goodwill .org) * Learn, Earn & Work Project at the National Conference of State Legislatures (www. ncsl.orglprogram s/em ploy) * Center for Workforce Preparation at the U.S. Chamber of Commerce (www.uschamber.comlCWP) * National Association of Workforce Boards (www. nawb.org) * National Youth Employment Coalition (www.nyec.org) National Collaborative on Workforce and Disability NCWD For Youth National Collaborative on Workforce and Disability National Collaborative on Workforce and Disability for Youth c/o Institute for Educational Leadership 1001 Connecticut Avenue, NW Suite 310 Washington, DC 20036 877-871- 0744-Toll-free www.ncwd-youth.info Introducing NCWD/ Youth In late 2001, the Office of Disability Employment Policy (ODEP) in the U.S. Department of Labor funded two national technical assistance centers designed to assist the workforce development community to overcome the issues affecting the employment of people with disabilities. One of these centers focuses its activities on adults with disabilities and the other on youth with disabilities. The National Collaborative on Workforce and Disability for Youth (NCWD/ Youth) is composed of partners with expertise in disability, education, employment, and workforce development issues. The Collaborative is charged with assisting state and local workforce development systems to integrate youth with disabilities into their service strategies. The Collaborative is housed at the Institute for Educational Leadership in Washington, DC. The Collaborative strives to ensure that youth with disabilities are provided full access to high quality services in integrated settings, in order to maximize their opportunities for employment and independent living. Products and Services Over its five-year life, the Collaborative will offer a range of services to state and local workforce investment boards, youth councils, other workforce system youth programs, and to ODEP grantees. Products and services will include: * A ful/y-accessible, content-rich website; A repository of materials generated by the ODEP grantees; * A research based framework for evaluating state and local "best practices;" * Specialized support to the Department of Labor's High School/High Tech and Innovative Demonstration grantees; * Publications tailored to the needs and con-cerns of the various workforce development stakeholder groups; * Capacity-building training materials for use by state and local workforce development organizations; * An information and resource center accessible to the public and to the workforce develop-ment system; and, Development of materials and specialized training designed to improve the capacity of frontline service providers. ODEP also funded a series of demonstration grants designed to test and build a set of "promising practices models." Seven local organizations were awarded Innovative Demonstration Grants for Youth with Disabilities for testing various models of youth empowerment and employment development. The Department of Labor also invested in realigning a number of existing High School/High Tech programs with the workforce investment system and starting a handful of new High School/High Tech programs around the country. The High School/High Tech Program provides opportunities for students with disabilities to explore careers in science, mathematics and technology. The Program is one of several initiatives of the Office of Disability Employment Policy (ODEP). For more in formation call or visit our Web sites: National Collaborative on Workforce and Disability for Youth E-mail: Collaborative@iel.org www. ncwd-youth .info 877-871- 0744-Toll-free for general technical assistance questions www.infouse.com/highschool- hightech 877-871-4748---Toll-free for information on High School High Tech sites Disability Culture In Search of Disability Culture By Miriam Braunstein (a discussion of issues of importance to the philosophy of the Youth Leadership Forum) Although disabled since age 8, I was almost I 9 years old before I had any inkling that there was something people call disability culture. I first heard about it three years ago from a friend living in Berkeley, Calif., who happened to be picking up a few hours working for Hale Zukas, a founder of the Berkeley center for Independent Living. Zukas had also helped build the World Institute on Disability alongside its founders, Judith Heumann, Joan Leon and the late Ed Roberts. Then, of course, those names meant nothing to me. "There's a magazine with angry letters," my friend said, referring, I believe, to The Disability Rag. "And there's one with the quadriplegic Playboy model. They have stories, ads, stuff like that." Well, who would believe a story like that? As proof, he sent copies of these things, along with ADAPT sticker cutouts and WID literature. I was mesmerized. Nineteen years as a Jew, with all the history it entails, had not prepared me for anything like this. At first, even the idea of catheter ads was liberating. I had no idea that disability was discussed outside the hospital wards. I didn't know that disabled people talked to one another, much less organized. As intrigued as I was, my ablebodied parents were wary. As my interest grew, they moved from nervous to terrified and finally to combative. "What," my mother asked, "is with this crippled thing? Why are you reading this stuff?" "Well, I like to read about other disabled people," I said, or something near. "I like to hear what they think." They think like me, is what I was thinking, but not saying. "Well, you have nothing in common with them." said my father, and that was all they wanted to hear of it. culture was important things, they said, like your religion. A disease shouldn't define you. To their minds, as to the minds of any number of nondisabled people operating under old notions about the nature of disability, I was a nice Jewish girl who was sick. And even if it wasn't my fault, I certainly wasn't supposed to run around flaunting it, for heaven's sake. A little decorum and embarrassment, please! In other words, my disability was a circumstance, not a part of who I was. A Skewed History I was getting my first taste of sharing a common culture with those I increasingly felt were my people, and it was intoxicating. If this was disability culture, I had to find my own place in it, regardless of what any number of ablebodied people thought. That is not as simple as it seems. It is easy to find signs of disability culture; I had the magazines, a bit of history and a feeling of kinship with the disabled community. I had When Billy Broke His Head... and Other Tales of Wonder, a couple of bios of famous gimps, a threatening bumper sticker and a real desire to find out who I was. What I didn't have was a solid feeling of what, exactly, disability culture is or why it should be so upsetting to the ablebodied people in my world. And that is what I began looking for. Steven Brown, a co-founder of the Institute on Disability culture in Las cruces, N.M., has spent a good deal of time considering the elusive combination of disability and culture. To Brown, it is the communal experience of oppression and resilience that generates the art, music and literature of disability culture. "Most importantly," Brown says, "we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity." It is, however, an identity that can be amazingly hard to come by. Unlike other established cultures, we have precious little family tradition; with the exception of some hereditary disabilities, disabled children are not usually born to disabled parents. Give Brown's model-which places the history of oppression that disabled people share firmly at its epicenter-this lack of intergenerational contact is a decided disadvantage. "What we don't have is parents with disabilities teaching kids with disabilities," he says. "What we do have is people of an older generation teaching people of a younger generation." The triumphs of modern medicine have gone a long way toward providing second and third generations. In the days when spinal cord injury was, at best, something you could survive but not live with, when muscular dystrophy and spina bifida were fatal and most other people with disabilities were kept in back bedrooms or in institutions, older disabled role models were hard to come by. Only after people with disabilities were let out of the house with Section 504, IDEA and, later, the ADA, and only after medicine advanced enough to keep us alive if not kicking, was there any chance of an oral history being discovered. It exists, says Brown, but it isn't easily accessible. "We didn't think we had a history," he says. "Well, we have one, but nobody thought it was worth telling." If the key to disability culture lies in our history, as Brown suggests, then a whole new problem arises; namely, how to access that history. A sprinkling of books written in the past few years-No Pity and Enforcing Normalcy, for example--focus on disability history and several more at least touch on it, but before the early 1 980s, very little was written on disability that wasn't clinical. Even less, with a few notable exceptions, was written by disabled people. That is the biggest problem, says writer and performance artist Cheryl Marie Wade, who lives in Berkeley. If disability history is recorded by nondisabled people, it isn't really a part of disability culture. "Disability culture!" says Wade, "is disabled people talking about ourselves." And it is ablebodied people, she says, who apportion money for the disabled artistic community-thus negating the point of disability culture. "A lot of the programs were started by well-meaning able-bodied people," Wade says. "But the community outgrew the organizations, and the organizations don't reflect that. The paid positions are held by able-bodied people. They set the tone. They set the agenda." As long as that is the case, she says, disability culture is a footnote to mainstream culture, "a subculture." Wade says her work expresses, to the best of her ability, what it is to be disabled. She will scream, yell, wave her bent hands in people's faces. That, she says, is one component of disability culture--to bring the existence of a whole group of people with an entirely separate agenda and lifestyle to the attention of the mainstream community. This is the part of disability integration that cannot be legislated. "Just because we have ramps doesn't mean people look at us as human beings," Wade says. "The point is to say, 'Hey you, we're not just like you, but so what?"' "We didn't think we had a history. Well, we have one, but nobody thought it was worth telling." -Steve Brown Like Brown, Wade points to pride as a definitive part of culture. It was not until she threw the shawl that she used to hide her hands off her lap and out of her life that Wade was able to become an artist and confront society's view of the disabled. A Schizophrenic Line Paradoxically, disability culture is held to be both a means to insulate ourselves from the larger society and a means to integrate ourselves. Again, says Brown, it comes down to confidence- and pride. If the disabled community can band together in its culture, it can force its way into the collective consciousness of mainstream culture. "It's the opposite of anti-mainstream," Brown says. "It's not possible for people with disabilities to truly integrate until we are recognized as having pride in who we are as disabled people." "We walk an almost schizophrenic line," agrees Tom Kemp, CEO of Very Special Arts, an organization based in Washington, D.C., that funds disabled artists worldwide. "We talk inclusion, and then we talk disability pride." Like Brown, Kemp says the two goals can coexist. Pride, he says, is making claims for our rights based on self-worth, and disability culture is expression of the ways in which we value ourselves and our contributions. "A whole lot of people don't know how the arts can express what joyous lives we can have," Kemp says, and the ignorance includes disabled people. There is no way of knowing how few or how many people actually understand disability pride, or really experience it. Most disabled college-age people were born after Section 504, and were still in their mid-teens when the ADA was passed. In spite of all the legislation, disability culture, history, pride and activism are still, for many people, an accidental find. They are spread primarily through community word-of-mouth, which doesn't work well in an isolated and fragmented population. Access to disability culture must be increased, Kemp says, if young people are to continue to help it to develop. "We walk an almost schizophrenic line. We talk inclusion, and then we talk disability pride." -John Kemp "They need to know who their heroes are," he says. "It's a funny thing, because I was always told I had to compete in the 'real world.' Now I know that disability is a part of who I am, and young people need to know that, too." This realization, Kemp says, makes it possible for disabled people to compete to the best of their abilities without denying their disabilities. Linda Carpenter, 27, who has a congenital disability, says that during her childhood, disabled role models were simply not available. carpenter, though, says the lack of available "heroes" in the disabled world did not leave her isolated or without resources. "It made me more mainstreamed, and I'm glad I was mainstreamed," she says. "I didn't really think it was a bad thing to be like everybody else." Carpenter learned that she could relate normally to ablebodied people. "I broke a lot of braces jumping off things like the other kids," she says. In her 20s, and for reasons she doesn't yet understand, Carpenter initiated more relationships among her disabled peers. "I found some people I wanted to be friendly with, I suppose," she says. The need for guidance and camaraderie she responded to extends from people growing up with disabilities to people whose disabilities are acquired later in life. Subcultures, Multicultures When Detroit writer Clark Iverson developed epilepsy I 6 years ago at age 20, he had no idea, he says, of the existence of disability culture. "I grew up thinking one way, and I was forcibly made to think another way," Iverson says. "I've become aware [of disability culture] gradually, over the past 10 years or so." Iverson's epilepsy is normally unnoticeable, so his involvement has come in spite of nondisabled friends who are puzzled by his attraction to disability issues. His primary commitment has been political, he says; most of disability culture is something that "falls under the heading of one of the things in life I haven't had time to pursue." He doubts that he'll become actively involved in other aspects of disability culture, a concept that to him is self-limiting anyway; he does not think such a large and diverse group can bond effectively. Congenital amputee Michael Paul of Warren, Mich., takes Iverson 's doubt one step further; he says disability culture, while a trendy concept, has had little impact on his life. He doesn't believe any sort of true disability culture can exist at all. "The fact that there are nondisabled people in the world makes it impossible." Paul says. "We're not living on a gimp desert island. A leper colony is the closest we can come to disability culture--disability subculture, maybe." Instead of pursuing disability culture, Paul says, disabled people should simply accept themselves and work on making mainstream culture accept our differences and appreciate our similarities. This concept is not necessarily at odds with disability culture, say Brown. "Everybody is a part of different cultures," he says. "It's one more way to define yourself." There is no consensus that I have found on what will happen to disability culture. Nobody can predict the development of a trend in its embryonic stages and, for now, that is precisely where disability culture is. It remains an inexact and distinctly flawed concept; hard to define, hard to find, hard to spread. Within it are any number of branches; it is, most say, about pride, and we can demonstrate our pride in many different ways. But you don't have to define disability culture to notice it, to understand it or to crave it. I suppose the worst fear of my Yiddeshe mama has been fulfilled; I have found another heritage to identify with. Just as surely as I want to visit Jerusalem, I want to make a pilgrimage to Berkeley-to see the first stirrings of the independent living movement. I apply myself to the history of ADAPT the way my grandfathers read the Talmud. But as I bring disability culture into the stew of unlikely things that produced who I am, it becomes less urgent and all-encompassing. Probably, it will eventually settle in next to all the other words I use to define myself: Jewish, Italian, female, brunette, whatever. It will become another part of my personality, integral but no overwhelming. I went to my parents' house a while back to visit my mother, newly home from a jaunt to Israel. She was on a heritage kick, humming the Israeli anthem, brandishing a copy of the Jerusalem Post and handing out Hebrew name necklaces left and right. "Here," she said, tossing one over my head. "So you don't forget who you are." I put it on; it was pretty and would help any Hebrew-speakers who wonder who I am. "You know, ma," I said, "I am still Jewish." She waved that off, and leaned down to me. "Just remember," she murmured, "where you come from." Because it isn't until you know where you're from that you can figure out where you're going-as a disabled person or as anything else. Emerging Disability Policy Framework IOWA LAW REVIEW August 2000 Volume 85/No. 5 Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy Robert Silverstein Reprinted from the August 2000 Vol. 85/No. 5 APPENDIX 1 An Overview of the Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy Robert Silverstein( INTRODUCTION PART I: AN OVERVIEW OF THE EMERGING DISABILITY POLICY FRAMEWORK INTRODUCTION STATEMENT OF FINDINGS AND RATIONALE PRECEPT AND OVERARCHING GOALS DEFINITIONS OF DISABILITY CORE POLICIES A. EQUALITY OF OPPORTUNITY 1. Individualization 2. Genuine, Effective, and Meaningful Opportunity 3. Inclusion and Integration B. FULL PARTICIPATION 1. Involvement and Choice by the Individual in Decisions Affecting the Individual 2. Involvement and Choice by the Individual's Family in Decisions Affecting the Individual 3. Involvement by Individuals and Families at the System Level C. INDEPENDENT LIVING 1. Independent Living Skills Development and Specialized Planning 2. Long-Term Services and Supports, Including Personal Assistance Services and Supports 3. Cash Assistance and Other Forms of Suppor D. ECONOMIC SELF-SUFFICIENCY 1. Systems Providing Employment-Related Services and Supports 2. Cash Assistance and Other Programs of Assistance 3. Tax Policy Providing Incentives METHODS OF ADMINISTRATION A. STATE PLANS, APPLICATIONS, AND WAIVERS B. MONITORING AND ENFORCEMENT BY GOVERNMENT AGENCIES C. PROCEDURAL SAFEGUARDS D. ACCOUNTABILITY FOR RESULTS (OUTCOME MEASURES) E. REPRESENTATION AT THE INDIVIDUAL AND SYSTEMS LEVELS F. SINGLE LINE OF RESPONSIBILITY, COORDINATION, AND LINKAGES AMONG AGENCIES G. SERVICE COORDINATION (CASE MANAGEMENT) H. FINANCING SERVICE DELIVERY I. PRIVACY, CONFIDENTIALITY, ACCESS TO RECORDS, AND INFORMED CONSENT J. COMPREHENSIVE SYSTEM OF PERSONNEL DEVELOPMENT K. RESPONSIVENESS TO CULTURAL DIVERSITY L. FISCAL PROVISIONS M. FINANCIAL MANAGEMENT AND REPORTING PROGRAM SUPPORT A. SYSTEMS CHANGE INITIATIVES B. TRAINING OF INDIVIDUALS WITH DISABILITIES AND THEIR FAMILIES C. TRAINING OF PERSONNEL REGARDING PROMISING PRACTICES D. RESEARCH, TECHNICAL ASSISTANCE, AND INFORMATION DISSEMINATION PART II: GENERAL QUESTIONS FOR ANALYZING THE EXTENT TO WHICH DISABILITY-SPECIFIC OR GENERIC PROGRAMS OR POLICIES REFLECT THE DISABILITY POLICY FRAMEWORK INTRODUCTION 34 QUESTIONS RELATING TO STATEMENT OF FINDINGS AND RATIONALE 34 QUESTIONS RELATING TO PRECEPT 35 A QUESTION RELATING TO OVERARCHING GOALS 35 QUESTIONS RELATING TO DEFINITION OF DISABILITY 35 QUESTIONS RELATING TO CORE POLICIES 35 A. QUESTIONS RELATING TO EQUALITY OF OPPORTUNITY 35 1. Individualization 35 2. Genuine, Effective, and Meaningful Opportunity 36 3. Inclusion and Integration 37 B. A QUESTION RELATING TO FULL PARTICIPATION 37 C. QUESTIONS RELATING TO INDEPENDENT LIVING 38 D. QUESTIONS RELATING TO ECONOMIC SELF-SUFFICIENCY 38 QUESTIONS RELATING TO METHODS OF ADMINISTRATION 39 A. QUESTIONS RELATING TO STATE AND LOCAL PLANS, APPLICATIONS, AND WAIVERS 39 B. QUESTIONS RELATING TO MONITORING AND ENFORCEMENT BY GOVERNMENT AGENCIES 39 C. QUESTIONS RELATING TO PROCEDURAL SAFEGUARDS FOR INDIVIDUALS, THEIR FAMILIES, AND REPRESENTATIVES 40 D. QUESTIONS RELATING TO ACCOUNTABILITY FOR RESULTS (OUTCOME MEASURES) 40 E. QUESTIONS RELATING TO REPRESENTATION AT THE INDIVIDUAL AND SYSTEMS LEVEL 40 F. QUESTIONS RELATING TO SINGLE LINE OF RESPONSIBILITY/COORDINATION AND LINKAGES AMONG AGENCIES 40 G. A QUESTION RELATING TO SERVICE COORDINATION (CASE MANAGEMENT) 41 H. QUESTIONS RELATING TO FINANCING SERVICE DELIVERY 41 I. QUESTIONS RELATING TO PRIVACY, CONFIDENTIALITY, ACCESS TO RECORDS, AND INFORMED CONSENT 41 J. QUESTIONS RELATING TO COMPREHENSIVE SYSTEM OF PERSONNEL DEVELOPMENT 41 K. A QUESTION RELATING TO RESPONSIVENESS TO CULTURAL DIVERSITY 42 L. A QUESTION RELATING TO FISCAL PROVISIONS 42 M. QUESTIONS RELATING TO FINANCIAL MANAGEMENT AND REPORTING 42 QUESTIONS RELATING TO PROGRAM SUPPORT 42 INTRODUCTION Society has historically imposed attitudinal and institutional barriers that subject persons with disabilities to lives of unjust dependency, segregation, isolation, and exclusion. Attitudinal barriers are characterized by beliefs and sentiments held by nondisabled persons about persons with disabilities. Institutional barriers include policies, practices, and procedures adopted by entities such as employers, businesses, and public agencies.1 Sometimes, these attitudinal and institutional barriers are the result of deep-seated prejudice.2 At times, these barriers result from decisions to follow the "old paradigm" of considering people with disabilities as "defective" and in need of "fixing."3 At other times, these barriers are the result of thoughtlessness, indifference, or lack of understanding.4 It is often difficult, if not impossible, to ascertain precisely why the barriers exist. In response to challenges by persons with disabilities, their families, and other advocates, our nation's policymakers have slowly begun to react over the past quarter of a century. They have begun to recognize the debilitating effects of these barriers on persons with disabilities and have rejected the "old paradigm." A "new paradigm" of disability has emerged that considers disability as a natural and normal part of the human experience. Rather than focusing on "fixing" the individual, the "new paradigm" focuses on taking effective and meaningful actions to "fix" or modify the natural, constructed, cultural, and social environment. In other words, the focus of the "new paradigm" is on eliminating the attitudinal and institutional barriers that preclude persons with disabilities from fully participating in society's mainstream. Aspects of the "new paradigm" were included in public policies enacted in the early 1970s.5 Between the 1970s and 1990, lawmakers further defined and society further accepted the "new paradigm."6 In 1990, the "new paradigm" was explicitly articulated in the landmark Americans with Disabilities Act (ADA)7 and further refined in subsequent legislation.8 Many people have documented the historical mistreatment of persons with disabilities. Others have described and analyzed the ADA as a civil rights statute that prohibits discrimination in the areas of employment, public services, public accommodations, and telecommunications. Few people have stepped back to consider the fundamental beliefs and core policies that were reflected in the 1970s legislation, explicitly articulated in the ADA, and further refined in subsequent legislation. Taken as a whole, these efforts have critical implications regarding the design, implementation and evaluation of programs and policies that affect citizens with disabilities. The purpose of this overview is to provide a Disability Policy Framework consistent with the "new paradigm" that can be used as a lens or guidepost9 to design, implement, and evaluate generic,10 as well as disability-specific, public policies and programs to ensure meaningful inclusion of people with disabilities in mainstream society. To this end, this overview is targeted to the needs of several audiences. For federal, state, and local policymakers as well as persons with disabilities, their families and advocates, this overview offers a guidepost for designing, implementing, and assessing generic, as well as disability-related, programs and policies. For researchers, this overview provides a benchmark for studying the extent to which generic and disability-specific policies and programs reflect the "new paradigm" and achieve its goals. For service providers, this Appendix provides a lens for designing, implementing and evaluating the delivery of services to persons with disabilities. Finally, for college and university professors teaching courses that include disability policy, this overview provides a framework for policy analysis. This overview is divided into two parts. Part I describes the various components of the Emerging Disability Policy Framework. Using the Emerging Disability Policy Framework described in Part I, Part II of the overview includes an audit-a checklist of questions that stakeholders can use to assess the extent to which generic and disability-specific programs or policies reflect the components of the Emerging Disability Policy Framework. PART I AN OVERVIEW OF THE EMERGING DISABILITY POLICY FRAMEWORK INTRODUCTION Part I provides an overview of the major components of the Emerging Disability Policy Framework, including: * Statement of Findings and Rationale * Precept and Overarching Goals * Definitions of Disability * Core Policies * Methods of Administration * Program Support STATEMENT OF FINDINGS AND RATIONALE Every piece of disability-specific legislation promulgated since 1973 includes a carefully constructed rationale known as a "Statement of Findings." A well-constructed Statement of Findings includes the following four major items: 1. A description of the historical treatment of persons with disabilities; 2. A summary of the nature of the problem addressed by the proposed legislation; 3. An explanation of why the issue is important and why change is needed; and 4. A description of the role of various entities in designing, implementing, and evaluating the legislation. A Statement of Findings facilitates enactment of the legislation by convincing policymakers of its merits. Once the legislation is enacted, the rationale provides a clear statement to guide implementation and enforcement of the law.11 PRECEPT AND OVERARCHING GOALS In addition to the inclusion of a Statement of Findings, most major disability-specific legislation includes a statement of precept and goals. As with the Statement of Findings, a well-constructed precept and statement of goals further facilitates enactment of the legislation by convincing policymakers of the merits of the legislation. Once the legislation is enacted, the precept and goals provide clear statements to guide implementation of the law. In addition, the precepts and goals provide an explanation when there is uncertainty regarding legislative intent. The statements of precept and goals are either included within the Statement of Findings or within a separate section. They are sometimes referred to as a "Purpose" section or a "Statement of Policy." The precept of Disability Policy Framework is that disability is a natural and normal part of the human experience that in no way diminishes a person's right to participate fully in all aspects of life, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of the individual.12 According to the Americans with Disabilities Act, "the Nation's proper goals regarding individuals with disabilities are to assure: 1. equality of opportunity, 2. full participation [empowerment], 3. independent living, and 4. economic self-sufficiency . . . ."13 DEFINITIONS OF DISABILITY In addition to constructing a Statement of Finding and the precept and overarching goals of the legislation, stakeholders must define who will be protected or benefited from the proposed legislation. All laws include definitions of key terms. The definition of the term "disability" within the specific legislation is drafted to accomplish its specific purposes. For example, civil rights statutes contain a definition of "disability" that enables the reader to determine which individuals will be protected by the legislation.14 The definition of "person with a disability" is also included in formula grants and entitlement programs to determine which individuals are eligible for benefits or services.15 CORE POLICIES Once the rationale and goals for the proposed legislation are specified and definitions of disability are established, it is critical for stakeholders to specify the core policies. These statements describe the scope and limitations of the protections, the nature and type of benefits and services, and the circumstances under which benefits and services will be provided. The numerous core policies can best be understood when they are organized under the four goals of disability policy articulated in the ADA-equality of opportunity, full participation (empowerment), independent living, and economic self-sufficiency. Core policies from various categories of legislation affecting people with disabilities are provided below. A. EQUALITY OF OPPORTUNITY The goal of equality of opportunity (nondiscrimination) articulated in the ADA includes three core components: (1) individualization, (2) genuine, effective, and meaningful opportunity, and (3) inclusion and integration. 1. Individualization This is accomplished through the following actions: * Making decisions on the basis of the unique strengths, resources, priorities, concerns, abilities, and capabilities of each person with a disability, including individuals with significant disabilities.16 * Treating a person with a disability as an individual based on facts and objective evidence, and not based upon generalizations, stereotypes, fear, ignorance, prejudice, or pernicious mythologies.17 * Using definitions and eligibility criteria that result in even-handed treatment of a person with a particular disability and other similarly situated individuals, including nondisabled persons and persons with other disabilities.18 * Satisfying the broad, nondiscriminatory eligibility criteria by ensuring universal access to generic programs for persons with disabilities.19 * Using interdisciplinary assessments performed on a timely basis by qualified personnel conducted across multiple environments in making fact-specific decisions. Using information provided by the individual with a disability, the person's family, or the representative.20 * Developing individualized plans that identify and describe needs, goals, objectives, services, and accountability measures.21 2. Genuine, Effective, and Meaningful Opportunity Ensure that the opportunities that are made available to persons with disabilities are genuine, effective, and meaningful.22 This includes the following actions: * Providing "appropriate" services and supports that address the unique needs of the individual, not the needs of the "average" person.23 * Making reasonable modifications to policies, practices, and procedures, unless it would fundamentally alter the nature of the program.24 * Providing auxiliary aids and services, unless it would result in an undue hardship to the covered entity.25 * Providing reasonable accommodations to employees, unless it would result in an undue hardship to the covered entity.26 * Making programs physically accessible.27 * Providing accessible communications.28 3. Inclusion and Integration Foster the inclusion and integration of persons with disabilities in programs, projects, and activities provided by covered entities. Persons with disabilities should not unnecessarily or unjustifiably be isolated, segregated, or denied effective opportunities to interact with nondisabled persons and to participate in mainstream activities. This can be accompanied by the following: * Administering programs, projects, and activities in the most integrated setting appropriate to the needs of the individual.29 * Providing services in the least restrictive environment (continuum of program options).30 B. FULL PARTICIPATION The second goal of disability policy articulated in the ADA is full participation. This means empowering persons with disabilities, fostering self-determination, allowing real and informed choice, and participating actively in decision-making processes at the individual and system level (including self-advocacy).31 1. Involvement and Choice by the Individual in Decisions Affecting the Individual Foster the active involvement and real and informed choice of the individual with a disability in decisions directly affecting the individual by encouraging the following: * Opportunities to receive information about policies that affect the individual; * Assessments of the individual's progress; * Planning; * Services and supports for the individual (including the right to refuse or terminate services); and * Selection of service providers.32 2. Involvement and Choice by the Individual's Family in Decisions Affecting the Individual Facilitate active involvement and real and informed choice of family members (under appropriate circumstances) in decisions affecting the individual with a disability and the family, including the following: * Opportunities to receive information about policies that affect the individual; * Assessments of the individual's progress; * Planning; * Services and supports for the individual (including the right to refuse or terminate services); and * Selection of service providers.33 3. Involvement by Individuals and Families at the System Level Encourage active involvement in policy decisions at the system level, including the following: * Opportunities to comment on agency proposals and agency response; * Participation in governing boards or councils that make or recommend policies relating to the program; and * Joint sign-off between the public agency and the governing board or council.34 C. INDEPENDENT LIVING The third goal of disability policy articulated in the ADA is to foster the ability and capabilities of individuals with disabilities to live independently. 1. Independent Living Skills Development and Specialized Planning Support independent living skill development and specialized planning, by the following: * Training in individual and systems advocacy; * Services related to securing food, clothing, and shelter; * Management of personal assistants and other support personnel; and * Use of assistive technology devices.35 2. Long-Term Services and Supports, Including Personal Assistance Services and Supports Support for long-term services and supports, including personal assistance services and supports necessary to enable an individual to live independently in the community, including consumer-directed and agency-directed personal assistance services and supports.36 3. Cash Assistance and other Forms of Support Support for cash assistance and other programs of assistance that enable the individual to live independently in the community include, for example: * Cash assistance,37 * Health care,38 * Transportation, * Housing,39 and * Food.40 D. ECONOMIC SELF-SUFFICIENCY The fourth goal of disability policy articulated in the ADA is to foster the economic security, stability, and productivity of persons with disabilities consistent with their actual (not perceived) capabilities, strengths, needs, interests, and priorities. 1. Systems Providing Employment-Related Services and Supports Systems providing employment-related skills and supports include, for example: * Education,41 * Training,42 * Self-employment (entrepreneurship),43 and * Ongoing assistance on-the-job.44 2. Cash Assistance and Other Programs of Assistance Support for cash assistance and other programs, such as the following: * Cash assistance, including worker incentive provisions;45 * Health care;46 * Housing;47 and * Food.48 3. Tax Policy Providing Incentives Tax policy that provides incentives to employers, consistent with business objectives, to hire people with disabilities and that provides deductions and credits for employment-related expenditures enabling an individual with a disability to work include incentives for employers49 and individuals with disabilities. METHODS OF ADMINISTRATION After providing the rationale and goals for the proposed legislation, establishing definitions for disability, and specifying the core policies, stakeholders must then consider the inclusion of administrative or accountability provisions. These provisions, which are referred to as "methods of administration," include such provisions as monitoring and enforcement to ensure implementation, procedural safeguards to ensure individuals are afforded due process of law, outcome measures to determine the impact of the legislation, and methods for financing programs. These methods of administration are designed to maximize the likelihood that the protections afforded by the civil rights statutes are realized, and that the services and benefits made available under entitlement and grant-in-aid programs are provided and implemented in accordance with best practices. Examples of methods of administration from various categories of legislation affecting people with disabilities are provided below. A. STATE PLANS, APPLICATIONS, AND WAIVERS State plans and applications describe how the public agency plans to satisfy the applicable requirements, including core policies and methods of administration. Waivers provide exemptions or alternative methods of implementation, including testing the provision of new services.50 B. MONITORING AND ENFORCEMENT BY GOVERNMENT AGENCIES Monitoring and enforcement maximizes the likelihood that recipients and contractors will comply with applicable requirements and implement the program to ensure results for persons with disabilities. This includes preparing monitoring instruments, conducting monitoring reviews, issuing reports, requiring corrective action, imposing sanctions, and securing remedies for individuals.51 C. PROCEDURAL SAFEGUARDS Procedural safeguards for individuals include the following: * The right to notice of rights;52 * The right to examine records;53 * The right to file a complaint;54 * The right to use of mediation and other forms of alternative dispute resolution;55 * The right to an administrative due process hearing and administrative review;56 and * The right to seek redress through private right of action in court, including remedies and the awarding of attorneys fees to prevailing parties.57 D. ACCOUNTABILITY FOR RESULTS (OUTCOME MEASURES) This area facilitates accountability for results using standards and performance indicators that reflect the expected outcomes for recipients with disabilities, the use of sanctions for failure to meet expected outcomes,58 and rewards for exceeding expectations.59 E. REPRESENTATION AT THE INDIVIDUAL AND SYSTEMS LEVELS This area facilitates public support for representation and advocacy at the individual and systems level to ensure meaningful involvement and choice. This includes the following: * Systems providing protection and advocacy at the individual and systems level;60 and * Self-advocacy training.61 F. SINGLE LINE OF RESPONSIBILITY, COORDINATION, AND LINKAGES AMONG AGENCIES It is beneficial to place accountability for the administration of a program in a single agency to avoid "buckpassing."62 At the same time, it is necessary to provide mechanisms for interagency coordination and collaboration to ensure that no one "falls between the cracks" and that agencies provide for the effective delivery of services.63 G. SERVICE COORDINATION (CASE MANAGEMENT) It is essential to provide service coordination to assist individuals in receiving necessary services when a comprehensive array of services is required and such services are provided or paid for by multiple agencies.64 H. FINANCING SERVICE DELIVERY This area includes proscribing methods for financing services through the allocation of funds or the establishment of cost reimbursement schemes (including outcome-based reimbursement schemes) that have the effect of denying effective opportunities for persons with the most significant needs.65 I. PRIVACY, CONFIDENTIALITY, ACCESS TO RECORDS, AND INFORMED CONSENT Protecting privacy and confidentiality and requiring informed consent minimizes the extent of government intrusion.66 Access to records assures that individuals have the necessary information to make informed choices.67 J. COMPREHENSIVE SYSTEM OF PERSONNEL DEVELOPMENT Personnel who provide services to beneficiaries must satisfy qualification standards to perform assigned tasks in an effective and efficient manner. Personnel knowledgeable about civil rights statutes and promising practices are preferred because they are able to provide state-of-the-art services to persons with disabilities.68 K. RESPONSIVENESS TO CULTURAL DIVERSITY Services must be provided in a culturally competent manner and be responsive to the beliefs, interpersonal styles, attitudes, language, and behaviors of individuals receiving services to ensure maximum participation in the program.69 L. FISCAL PROVISIONS Public agencies must use program funds to supplement-and not supplant-other sources of funding and must maintain their own fiscal effort.70 M. FINANCIAL MANAGEMENT AND REPORTING Grant funds should be managed in such a way to ensure fiscal control and fund accounting.71 PROGRAM SUPPORT Stakeholders provide the rationale and goals for the proposed legislation, establish definitions for disability, specify the core policies, and develop methods of administration provisions. In addition, stakeholders must ensure that initiatives conform to best practices and are state-of-the-art by adopting program supports, such as grants, to support systemic change, research, training, and technical assistance. Examples of program supports from various categories of legislation affecting people with disabilities are provided below. A. SYSTEMS CHANGE INITIATIVES This includes funding designed to assist public agencies in developing and implementing comprehensive reforms at the system or institutional level (policies, practices, and procedures).72 B. TRAINING OF INDIVIDUALS WITH DISABILITIES AND THEIR FAMILIES This area requires supporting model approaches for training individuals with disabilities and their families.73 C. TRAINING OF PERSONNEL REGARDING PROMISING PRACTICES This legislation provides support for personnel preparation and training, including training of specialists, generalists, and leaders.74 D. RESEARCH, TECHNICAL ASSISTANCE, AND INFORMATION DISSEMINATION This area includes support research, technical assistance, and information dissemination which all ensure that the programs are effective, state-of-the-art, and efficient.75 PART II GENERAL QUESTIONS FOR ANALYZING THE EXTENT TO WHICH DISABILITY-SPECIFIC OR GENERIC PROGRAMS OR POLICIES REFLECT THE DISABILITY POLICY FRAMEWORK INTRODUCTION Using the Disability Policy Framework described in Part I of Appendix 1, this part includes general questions for analyzing the extent to which disability-specific and generic programs or policies reflect the precept, goals, definitions, core policies, methods of administration, and program supports set out in the Disability Policy Framework. In other words, this part of this Appendix serves as a guidepost for evaluating, expanding, and improving the design and implementation of public policies affecting persons with disabilities. Answering these questions may entail, among other things, reviewing previous studies and reports, reviewing data, conducting analyses of proposed and final policy pronouncements, and conducting surveys of stakeholders. Not all questions articulated in this part are applicable to all programs and policies; for example, some questions may only be applicable to generic programs serving nondisabled persons, as well as persons with disabilities. QUESTIONS RELATING TO STATEMENT OF FINDINGS AND RATIONALE Is the program longstanding, undergoing major reform, or new? If new, does it replace an existing program? Was the program established on a sound premise? Has the program historically excluded persons with disabilities or specific categories of persons with disabilities? For example, has a policy, procedure, or accepted practice historically disqualified persons with significant disabilities from receiving services, or has a policy, procedure or accepted practice by a generic program automatically referred all persons with disabilities to disability-specific programs? Is there a history of segregation of persons with disabilities into specific slots or components of the program? Is there a history of denial of genuine, effective, and meaningful services in the program? Is there a history of ensuring that people with disabilities enjoy choice in assessments, planning, services provided, selection of service providers, and measures of progress? Is there history of fostering independent living and ensuring self-sufficiency? What efforts have been made to ascertain the prevalence of persons with disabilities among the prospective pool of eligible recipients of a generic program? What efforts have been made to ascertain the scope of unmet need? Is the public agency considering the historical treatment of persons with disabilities in the development of new policies and procedures and in the methods of administration it uses? QUESTIONS RELATING TO PRECEPT Does the program include a statement articulating the core precept on which it is based? Is the core precept of the program consistent with the precept of disability policy that disability is a natural and normal part of the human experience that in no way diminishes a person's right to fully participate in the program, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of the individual? A QUESTION RELATING TO OVERARCHING GOALS Do the goals of the program reflect the goals of federal disability policy articulated in the ADA-equality of opportunity, full participation (empowerment), independent living and economic self-sufficiency for persons with disabilities? QUESTIONS RELATING TO DEFINITION OF DISABILITY Does the definition of disability reflect the purposes of the particular legislation? How does the definition of disability relate to definitions used in other programs? Does it relate to the definition used in section 504 and the ADA? QUESTIONS RELATING TO CORE POLICIES A. QUESTIONS RELATING TO EQUALITY OF OPPORTUNITY 1. Individualization Do the policies and procedures governing eligibility and application for and delivery of services under the program: Account for the unique strengths, resources, priorities, concerns, abilities, and capabilities of each person with a disability, including individuals with significant disabilities? Account for the added dimension of poverty? Use definitions and eligibility criteria that result in even-handed treatment between a person with a particular disability and other similarly situated individuals, including nondisabled persons and persons with other disabilities? Satisfy the broad, nondiscriminatory eligibility criteria by ensuring universal access to generic programs for persons with disabilities? Support and promote the treatment of persons with a disabilities as individuals based on facts and objective evidence, not based on generalizations, stereotypes, fear, ignorance, or prejudice? Use interdisciplinary assessments performed by qualified personnel, conduct timely assessments across multiple environments, and use information provided by the individual with a disability and the person's family or representative in making fact-specific decisions? Use individualized plans to identify and describe needs, goals, objectives, services, and accountability measures? 2. Genuine, Effective, and Meaningful Opportunity Do the policies and procedures governing eligibility and application for and delivery of services under the program offer opportunities that are genuine, effective, and meaningful? Do the policies and procedures: Provide "appropriate" services and supports designed to meet the unique needs of the individual, not the needs of the "average" person? Make reasonable modifications to policies, practices, and procedures, unless it would fundamentally alter the nature of the program? Provide auxiliary aids and services, unless it would result in an undue hardship to the covered entity? Provide reasonable accommodations to employees, unless it would result in an undue hardship to the covered entity? Make a program physically accessible? Provide for communication accessibility? 3. Inclusion and Integration Do the policies and procedures governing eligibility and application for and delivery of services under the program foster the inclusion and integration of persons with disabilities, or do the policies and procedures unnecessarily or unjustifiably isolate or segregate persons with disabilities? B. A QUESTION RELATING TO FULL PARTICIPATION Do the policies and procedures governing the program foster the empowerment of persons with disabilities, real and informed choice, and active participation in decision-making processes at the individual and system level (including self-advocacy)? More specifically, do the policies and procedures governing the program foster: Active involvement and real and informed choice of the individual with a disability in areas including: Opportunity to receive information about policies that affect the individual? Assessments? Planning? Services? Selection of service providers? Measures of progress? Active involvement and real and informed choice of family members and other representatives (under appropriate circumstances) in decisions affecting the individual with a disability and the family, including: Opportunity to receive information about policies that affect the individual? Assessments? Planning? Services? Selection of service providers? Measures of progress? Active involvement in policy decisions at the system level (respecting the design, implementation and evaluation of a program), including: Consideration of input from consumers? Participation on governing boards and councils? Joint sign-off on policies by the governing board/council? C. QUESTIONS RELATING TO INDEPENDENT LIVING Do the policies and procedures governing the program foster the ability and capabilities of individuals with disabilities to live independently through support for independent living skill development, including: Training in individual and systems advocacy? Service related to securing food, clothing, and shelter? Training the management of personal assistants and the use of assistive technology? Specialized planning for transitioning to independent living? Do the policies and procedures governing the program enable the person with a disability to live independently through the provision of long-term services and supports, for example, consumer-directed personal assistance services and supports and assistive technology devices and services? Do the policies governing the program enable the person with a disability to live independently in the community through cash assistance or other forms of assistance? D. QUESTIONS RELATING TO ECONOMIC SELF-SUFFICIENCY Do the policies and procedures governing the program foster the economic security, stability, and productivity of persons with disabilities consistent with their actual (not perceived) capabilities, strengths, needs, interests, and priorities through support for: Systems that include universal access to generic services as well as access to specialized services and supports as an integral component of the system? Training, education, and employment of choice (including self-employment)? Ongoing supports on-the-job? Specialized planning (e.g., transition planning for children in high school)? Cash assistance programs that reflect the goal of maximizing economic self-sufficiency, including policies that provide incentives to work (e.g., waive or modify income and resource limits, and retain eligibility for acute and long-term services and supports)? QUESTIONS RELATING TO METHODS OF ADMINISTRATION A. QUESTIONS RELATING TO STATE AND LOCAL PLANS, APPLICATIONS, AND WAIVERS Does the plan/application include specific policies and procedures governing implementation for persons with disabilities? Do waiver requests have the effect of enhancing or diminishing opportunities for persons with disabilities? For example, is a waiver request designed to test new strategies for delivering services that reflect the goals of disability policy articulated in the ADA? Or is the waiver request based on "perceptions" that individuals with disabilities cannot succeed or participate in the program or assessment generally applicable to nondisabled persons? Does the plan/application explain how people with disabilities and their representatives were involved in the process of completing the plan/application? In addition to the inclusion of an assurance of nondiscrimination, does the plan/application include specific policies and procedures relating to implementation of the program consistent with section 504 of the Rehabilitation Act of 1973 and the ADA? B. QUESTIONS RELATING TO MONITORING AND ENFORCEMENT BY GOVERNMENT AGENCIES What are the respective roles and responsibilities of federal, state, and local agencies for monitoring and enforcement? Does the monitoring instrument developed by the government agency include specific inquiries related to persons with disabilities? If so, what are they? Does the government agency use a monitoring instrument for ascertaining compliance with section 504 of the Rehabilitation Act of 1973 and the ADA? If so, what is included? Do on-site monitoring reviews include assessments relating to meeting the needs of persons with disabilities and ensuring nondiscrimination? What sanctions are available and used? Under what circumstances? What incentives are available and used? How are findings of noncompliance used by the agency? Are findings of noncompliance used for purposes of ongoing continuous quality improvement reviews? What remedies are available? Is there a complaint resolution procedure that includes complaints involving discrimination on the basis of disability? C. QUESTIONS RELATING TO PROCEDURAL SAFEGUARDS FOR INDIVIDUALS, THEIR FAMILIES, AND REPRESENTATIVES Do the policies and procedures governing the program provide for: Notice of rights? Examination of records? The right to file a complaint? The use of mediation and other forms of alternative dispute resolution? Administrative due process hearings and administrative review? Redress through private right of action in court, including remedies and the awarding of attorneys' fees to prevailing parties? D. QUESTIONS RELATING TO ACCOUNTABILITY FOR RESULTS (OUTCOME MEASURES) Does the agency include outcome measures that address issues of specific relevance to persons with disabilities? Does the agency disaggregate data so the agency can determine whether its program is meeting the needs of persons with disabilities or persons with specific categories of disabilities as part of a process of continuous improvement? E. QUESTIONS RELATING TO REPRESENTATION AT THE INDIVIDUAL AND SYSTEMS LEVEL Does the public agency provide support for representation and advocacy at the individual and systems level, including support for systems providing protection and advocacy, and self-advocacy training? F. QUESTIONS RELATING TO SINGLE LINE OF RESPONSIBILITY/COORDINATION AND LINKAGES AMONG AGENCIES Is there a single agency (state or local) responsible for implementation of the program for all beneficiaries, including persons with disabilities? If not, how does the agency ensure compliance for persons with disabilities? Does the agency require the assignment of an individual who will be responsible for ensuring implementation of the program for persons with disabilities, particularly with respect to implementation of the program consistent with section 504 of the Rehabilitation Act of 1973 and the ADA? Has the agency developed policies and procedures for collaboration among agencies to ensure meaningful and effective delivery of necessary services to persons with disabilities, including cost sharing arrangements? G. A QUESTION RELATING TO SERVICE COORDINATION (CASE MANAGEMENT) Has the agency developed policies and procedures for service coordination to ensure that individuals with disabilities, particularly those with the most significant disabilities, receive the services they need, particularly where services are provided by multiple agencies? H. QUESTIONS RELATING TO FINANCING SERVICE DELIVERY Does the system for allocating funds among agencies and service providers facilitate or thwart accomplishment of the goals articulated in the ADA and the policies that effectuate the goals? For example, does the outcome-based reimbursement scheme used to pay service providers recognize and reward those who serve persons with the most significant disabilities and who cost more than the average recipient of services (risk adjustment)? Is the network of service providers adequate to address the needs of persons with disabilities eligible for assistance under the program? Is the financing system for services (for example, personal assistance services, assistive technology) consumer-directed? I. QUESTIONS RELATING TO PRIVACY, CONFIDENTIALITY, ACCESS TO RECORDS, AND INFORMED CONSENT Does the agency include specific policies and procedures protecting the rights of persons with disabilities to privacy? Confidentiality? Access to records? Does the agency include specific policies and procedures requiring informed consent? J. QUESTIONS RELATING TO COMPREHENSIVE SYSTEM OF PERSONNEL DEVELOPMENT Does the agency include specific training components regarding the implementation of its program (e.g., policy, "promising practices," and resource allocation) for persons with disabilities? Does the agency include specific training for its personnel regarding implementation of its program consistent with section 504 of the Rehabilitation Act of 1973 and the ADA? K. A QUESTION RELATING TO RESPONSIVENESS TO CULTURAL DIVERSITY Does the agency include policies and procedures that address the special needs of persons with disabilities from diverse cultural backgrounds? L. A QUESTION RELATING TO FISCAL PROVISIONS Do the "supplement, not supplant" and "maintenance of effort" provisions ensure continuation of funding from state and local sources for services provided to persons with disabilities? M. QUESTIONS RELATING TO FINANCIAL MANAGEMENT AND REPORTING Do the fiscal control and fund accounting procedures enable oversight with respect to the provision of funding for persons with disabilities consistent with legislative intent? QUESTIONS RELATING TO PROGRAM SUPPORT To the extent an agency supports efforts to improve the quality of services provided through initiatives (such as systems change grants, training, research, technical assistance, demonstrations, and information dissemination), do these initiatives include specific components or specific initiatives that address the unique needs of persons with disabilities? APPENDIX 2 MAJOR DISABILITY-RELATED LEGISLATION 1956-2000 1956 - Social Security Amendments of 1956 (P.L. 84-880) Established the Disability Insurance Trust Fund under Title II of the Social Security Act and provided for payment of benefits to workers with disabilities under the Social Security Disability Insurance program. Benefits were limited to workers age fifty and older. 1958 - Captioned Films for the Deaf Act (P.L. 85-905) Permitted the Office of Education to purchase, lease, or accept films (primarily recreational films), provide captions for them, and distribute them through state schools for the deaf, as well as through other appropriate state agencies. 1960 - Social Security Amendments of 1960 (P.L. 86-778) Eliminated the limitation on benefits to workers over age fifty (1956), and encouraged workers by authorizing a nine-month trial work period during which the beneficiary could have earnings without jeopardizing benefits. 1963 - Social Security Act Amendments of 1963 (P.L. 88-156) Established a new project grant program to improve prenatal care for women from low income families for whom the risk of mental retardation and other birth defects was known to be inordinately high. In addition, authorizations for grants to the states under the Maternal and Child Health and Crippled Children's programs (originally established in 1935 under P.L. 74-271) were increased and a research grant program was added. 1963 - Mental Retardation Facilities Construction Act of 1963 (P.L. 88-164) Authorized federal support for the construction of mental retardation research centers, university-affiliated training facilities, and community service facilities for children and adults with mental retardation. 1965 - Elementary and Secondary Education Act of 1965 (P.L. 89-10) The core of the Act, Title I, authorized a multi-billion dollar program of aid to assist the states and local school districts in providing compensatory education to educationally disadvantaged children residing in low-income areas. 1965 - Social Security Act Amendments of 1965 (P.L. 89-97) Title XVIII (Medicare) authorized health insurance benefits for eligible elderly persons or eligible persons with disabilities. Direct payments are made for medical services on behalf of eligible participants through "fiscal intermediaries," for example, private health insurance companies. "Part A" reimbursed hospitals and other covered entities. "Part B" provided supplemental medical insurance benefits. Title XIX authorized grants-in-aid to the states for the establishment of a medical assistance program to improve the accessibility and quality of medical care for low-income individuals (Medicaid). 1965 - Elementary and Secondary Education Act Amendments of 1965 (P.L. 89-313) Authorized aid to state agencies operating and/or supporting schools for children with disabilities. 1966 - Library Services and Construction Act Amendments of 1966 (P.L. 89-511) Authorized assistance for students with physical or mental disabilities who were in residential schools operated or substantially supported by the state. Part B of Title IV of the Act made federal funds available to state agencies for library services for individuals who were certified by a responsible authority as unable to read or to use conventional printed materials as a result of physical limitations. Such services could be provided through public or nonprofit library agencies or organizations. 1966 - Military Medical Benefits Act Amendments of 1966 (P.L. 89-614) Expanded health care benefits for dependents of active duty members of the uniformed services (the Army, Navy, Marine Corps, Air Force, Coast Guard, and the commissioned corps of Public Health Service). Under the expanded benefits of the Civilian Health and Medical Program of the Uniformed Services Program (CHAMPUS) for the handicapped, the spouse or child of an active duty member is eligible for services if he or she has a serious physical disability or is moderately to severely mentally retarded. 1967 - Mental Retardation Amendments of 1967 (P.L. 90-170) Authorized federal funds to assist in the cost of initiating services in community mental retardation facilities. 1967 - Elementary and Secondary Education Act Amendments of 1967 (P.L. 90-247) Expanded instructional media programs to provide for the production and distribution of educational media for the use of persons with all types of disabling conditions (not just deafness), their parents, actual or potential employers, and other persons directly involved in working on behalf of persons with disabilities. 1967 - Social Security Act Amendments of 1967 (P.L. 90-248) Added a list of mandatory and optional services under the Medicaid program and required participating states to offer early and periodic screening, diagnosis, and treatment services to all Medicaid-eligible children. 1968 - National School Lunch Act and Child Nutrition Act of 1968 (P.L. 90-302) The child care component provided federal assistance for meals served in institutions providing nonresidential day care for children. Facilities eligible to participate included day care centers, settlement houses, recreation centers, and institutions providing day care for youngsters with disabilities. 1968 - Architectural Barriers Act of 1968 (P.L. 90-480) Required buildings and facilities designed, constructed, altered, or financed by the federal government after 1969 to be accessible to and usable by persons with disabilities. 1968 - Vocational Education Act Amendments (P.L. 90-576) Required each state to earmark ten percent of its basic grant for services for youth with disabilities. 1970 - Elementary and Secondary Education Act Amendments of 1970 (P.L. 91-230) Created a separate Act, The Education of the Handicapped Act (EHA). Part B authorized grants to states to assist them in initiating, expanding, and improving programs for the education of children with disabilities. EHA also established several competitive grant programs such as personal preparation, research, and demonstration. 1970 - Urban Mass Transportation Act Amendments of 1970 (P.L. 91-453) Required eligible local jurisdictions to plan and design mass transit facilities and services so that they would be accessible to and useable by people with disabilities. 1970 - Developmental Disabilities Services and Facilities Construction Amendments of 1970 (P.L. 91-517) Included broad responsibilities for a state planning and advisory council to plan and implement a comprehensive program of services for persons with developmental disabilities. In addition, the legislation authorized grants to support interdisciplinary training in institutions of higher education of personnel providing services to persons with developmental disabilities (currently known as university-affiliated programs). 1971 - Amendments to Title XIX of the Social Security Act (Medicaid Program) (P.L. 92-223) Authorized public mental retardation programs to be certified as intermediate care facilities and requires that these programs offer, among other things, "active treatment." 1972 - Small Business Act Amendments of 1972 (P.L. 92-595) Expanded the authority of the Small Business Administration to provide direct and guaranteed loans for nonprofit sheltered workshops employing persons with disabling conditions and individuals with disabilities interested in establishing their own businesses. 1972 - Social Security Amendments of 1972 (P.L. 92-603) Repealed existing public assistance programs and added in their place a new Title XVI (Supplemental Security Income, SSI) program. This program authorizes cash benefits for individuals and couples who are aged, blind, or disabled. In addition, children under eighteen years of age with disabilities or blindness are eligible for benefits, provided that their disabilities were comparable in severity to adult recipients. Medicare coverage was authorized for Social Security beneficiaries with disabilities after they fulfilled a specified waiting period. 1973 - Social Security Disability Act Amendments of 1973 (P.L. 93-66) Tied increases in benefit levels under the disability insurance program to the Consumer Price Index, thus authorizing automatic annual cost-of-living adjustments in benefit payments. 1973 - Federal-Aid Highway Act of 1973 (P.L. 93-87) Authorized the use of funds under the Highway Program "to provide adequate and reasonable access for the safe and convient movement of physically handicapped persons, such as across curbs constructed or replaced at all pedestrian crosswalks throughout the states." Improvement funds may also be used for providing accessible rest stop facilities. 1973 - Rehabilitation Act of 1973 (P.L. 93-112) Included a complete revision of the state formula grant supporting the vocational rehabilitation program and the competitive programs supporting personnel development, research, and demonstrations. In addition, the legislation, among other things, adds "Section 502," which established the Architectural and Transportation Barriers Compliance Board to enforce the Architectural Barriers Act of 1968 and provide technical assistance to agencies subject to section 504 regulations. In addition, the legislation adds "Section 504," which prohibited discrimination against otherwise qualified persons with disabilities in any program or activity receiving federal funds. 1973 - Amtrak Improvement Act of 1973 (P.L. 93-146) The National Railroad Passenger Corporation was directed to take all steps necessary to ensure that no elderly or handicapped individual is denied intercity transportation on any passenger train operated by or on behalf of the Corporation. Steps include: acquiring special equipment and devices and conducting special training for employees; designing and acquiring new equipment and facilities and eliminating architectural and other barriers in existing equipment or facilities; and providing special assistance to persons who are elderly or disabled while boarding and alighting and within terminal areas. 1974 - Housing and Community Development Amendments of 1974 (P.L. 93-383) Expanded the low-income rent subsidy program under "Section 8" to include families consisting of single persons with disabilities. The legislation also extended the "Section 202" direct loan program to nonprofit agencies to projects for persons with mental as well as physical disabilities. 1974 - Elementary and Secondary Education Amendments of 1974 (P.L. 93-380) Included amendments to Part B of the Education of the Handicapped Act (EHA) that laid the basis for comprehensive planning, the delivery of additional financial assistance to the states, and the protection of handicapped children's rights. 1974 - Urban Mass Transportation Act Amendments of 1974 (P.L. 93-503) Required project applicants to assure that the fares charged to the elderly or persons with disabilities during nonpeak hours do not exceed one-half of generally applicable rates for other riders during peak hours. In addition, localities were permitted under this Act to transport riders who are elderly or disabled free of charge and still be eligible for federal grant aid. 1974 - Community Services Act (P.L. 93-644) Stipulated that ten percent of children enrolled in the Head Start program must be children with disabilities. 1974 - Social Services Amendments of 1974 (P.L. 93-647) Consolidated social service grants to states under a new Title XX of the Social Security Act. 1975 - Developmental Disabilities Assistance and Bill of Rights Act (P.L. 94-103) Created a "bill of rights" for persons with developmental disabilities, funded services for persons with developmental disabilities, added a new funding authority for university affiliated facilities, and established a system of protection and advocacy organizations in each state. 1975 - Education for All Handicapped Children Act (P.L. 94-142) Amended the Education of the Handicapped Act to mandate a free appropriate public education for all children with disabilities in a state, regardless of the nature or severity of the child's disability (Part B of the Education of the Handicapped Act). 1977 - Tax Reduction and Simplification Act (P.L. 95-30) Congress authorized a special tax credit to induce businesses to hire certain categories of chronically unemployed workers, disadvantaged youth, welfare recipients, and other hard to place persons, including individuals with disabilities. 1977 - Legal Services Corporation Act Amendments of 1977 (P.L. 95-222) Required the Corporation to establish procedures for determining and implementing service priorities, taking into account the relative needs of clients eligible for assistance, including people with disabilities and other individuals facing special difficulties in accessing legal services. 1978 - Civil Rights Commission Act Amendments of 1978 (P.L. 95-444) Expanded the jurisdiction of the Civil Rights Commission to include protection against discrimination on the basis of handicap. 1978 - Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments (P.L. 95-602) Established the National Institute of Handicapped Research and new programs for people with disabilities, including comprehensive service centers, independent living centers, recreation programs, and pilot programs for employment. The legislation also updated and made functional the definition of the term "developmental disability" and clarified the functions of the university-affiliated programs. 1979 - Food Stamp Act of 1979 (P.L. 96-58) Authorized food stamps for residents of community living arrangements for persons with blindness or disabilities, by redefining "eligible households" to include disabled or blind recipients of benefits under Title II or Title XVI of the Social Security Act who are residents in a public or private nonprofit group living arrangement that is certified by the appropriate state agency or agencies regulations issued under section 1616(e) of the Social Security Act. 1980 - Civil Rights of Institutionalized Persons Act (P.L. 96-247) Authorized the U.S. Department of Justice to sue states for alleged violations of the rights of institutionalized persons, including persons in mental hospitals or facilities for people with mental retardation. 1980 - Social Security Act Amendments (P.L. 96-265) Authorized special cash payments (section 1619(a)) and continued Medicaid eligibility (section 1619(b)) for individuals who receive Supplemental Security Income (SSI) benefits but, nonetheless, engage in substantial gainful activity. The provision was made effective for three years. 1980 - Federal Advisory Committee Act (P.L. 96-523) Permitted the employment of personal assistants for federal employees with disabilities both at their regular duty station and while on travel status. 1981 - Omnibus Budget Reconciliation Act (P.L. 97-35) Consolidated six programs authorized under Title V of the Social Security Act into a single block grant authority (Maternal and Child Health) to address, among other things, the needs of children with special health care needs. In addition, the existing Title XX program was converted into a Social Services Block Grant Program. Authorized the Secretary of Health and Human Services to grant "home and community-based" waivers to enable states to furnish personal assistance and other services to individuals who, without such services, would require institutional care as long as costs under the waiver do not exceed the cost of providing institutional care to the target population. Limited Child Care Program to children up to age twelve, except children with disabilities, for whom no age limit was set. 1981 - Small Business Act Amendments of 1981 (within the Omnibus Budget Reconciliation Act of 1981, P.L. 97-35) Placed the Handicapped Assistance Loan Program administratively within the regular SBA loan system. 1982 - Tax Equity and Fiscal Responsibility Act of 1982 (P.L. 97-248) Permitted states to cover under their Medicaid plans home care services for certain children with disabilities, even though family's income and resources exceeded state's normal eligibility standards. 1982 - Job Training Partnership Act (P.L. 97-300) Revamped the Comprehensive Employment and Training Act (CETA). The Act emphasizes training for private sector jobs. The Act established a "State Job Training Coordinating Council" and the "Private Industry Council (PIC)". 1982 - Telecommunications for the Disabled Act of 1982 (P.L. 97-410) Required that workplace telephones used by persons with hearing aids and emergency phones be hearing-aid-compatible. 1984 - Rehabilitation Act Amendments of 1984 (P.L. 98-221) Transformed the National Council on Disability from an Advisory Board in the Department of Education into an independent federal agency. 1984 - Voting Accessibility for the Elderly and Handicapped Act (P.L. 98-435) Required that registration and polling places for federal elections be accessible to persons with disabilities. 1984 - Child Abuse Amendments of 1984 (P.L. 98-457) Required states to enact procedures or programs within child protection agencies to respond to cases in which medical treatment is withheld from disabled infants. 1984 - Social Security Disability Benefits Reform Act of 1984 (P.L. 98-460) Extended the section 1619 worker incentive program under SSI for an additional three years. The 1984 amendments also required the Secretary of HHS to publish uniform standards for SSI and SSDI disability determinations. 1984 - Developmental Disabilities Act of 1984 (P.L. 98-527) Added a statement of purpose to the Act and authorized protection and advocacy systems to have access to the records of persons with developmental disabilities residing in institutions. 1985 - Consolidated Omnibus Budget Reconciliation Act of 1985 (P.L. 99-272) Authorized states to cover case management services on less than a statewide or comparable basis to targeted groups under Medicaid; expanded the definition of "habilitation" for Home and Community-Based Waiver recipients with developmental disabilities to cover certain pre-vocational services and supported employment for previously institutionalized individuals; authorized states to cover ventilator-dependent children under the waiver program if they would otherwise require continued inpatient care. 1986 - Protection and Advocacy for Mentally Ill Individuals Act of 1986 (P.L. 99-319) Established a formula grant program operated by existing protection and advocacy systems primarily focusing on incidences of abuse and neglect of mentally ill individuals. 1986 - Education of the Deaf Act of 1986 (P.L. 99-371) Changed the name of the school from "Gallaudet College" to "Gallaudet University," and extended the statutory authority of the National Training Institute for the Deaf (a residential facility for postsecondary technical training and education for individuals who are deaf in order to prepare them for successful employment) (Title II). Established a Commission on Education of the Deaf under Title III of the Act. The Commission consists of twelve members that study the quality of infant and early childhood programs, as well as elementary, secondary, postsecondary, adult, and continuing education programs for individuals who are deaf. The Commission makes recommendations to the President and Congress for improving current programs and practices. 1986 - Handicapped Children's Protection Act (P.L. 99-372) Overturned a Supreme Court decision and authorized courts to award reasonable attorneys fees to parents who prevail in due process proceedings and court actions under part B of the Education of the Handicapped Act. 1986 - Air Carriers Access Act (P.L. 99-435) Prohibited discrimination against persons with disabilities by air carriers and provided for enforcement by the U.S. Department of Transportation. 1986 - Education of the Handicapped Act Amendments (P.L. 99-457) Included a new grant program for states to develop an early intervention system for infants and toddlers with disabilities and their families and provide greater incentives for states to provide preschool programs for children with disabilities between the ages of three and five. 1986 - Amendments to the Job Training Partnership Act (P.L. 99-496) Required special consideration for persons with disabilities in the awarding of discretionary grants. 1986 - Higher Education Act Amendments of 1986 (P.L. 99-498) Authorized construction/renovation grants and loans to institutions of higher education. Among the purposes for which funds under this Act may be used is to bring academic facilities into compliance with the Architectural Barriers Act of 1968 and section 504 of the Rehabilitation Act of 1973. 1986 - Rehabilitation Act Amendments of 1986 (P.L. 99-506) Clarified that supported employment is a viable outcome of vocational rehabilitation and specified that states must plan for individuals making the transition from school to work. 1986 - Tax Reform Act of 1986 (P.L 99-514) Extended "targeted jobs tax credit" through 12/31/88. 1986 - Employment Opportunities for Disabled Americans Act (P.L. 99-643) Made the section 1619(a) and 1619(b) work incentives a permanent feature of the Social Security Act. The Act also added provisions to enable individuals to move back and forth among regular SSI, section 1619(a) and section 1919(b) eligibility status. 1987 - Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1987 (P.L. 100-146) Updated language in the legislation, strengthened the independence of the State Planning Councils, strengthened authority of protection and advocacy systems to investigate allegations of abuse and neglect, and created separate line items for core funding and training for university affiliated programs. 1987 - Housing and Community Development Act of 1987 (P.L. 100-242) Required HUD to earmark fifteen percent of section 202 funds for non-elderly persons with disabilities. 1988 - Civil Rights Restoration Act (P.L. 100-259) Amended the Rehabilitation Act of 1973's definition of an individual with a disability and defined coverage of section 504 as broad (e.g., extending to an entire university) rather than narrow (e.g., extending to just one department of the university) when federal funds are involved. 1988 - Education Amendments of 1988 (P.L. 100-297) Made a number of changes in Chapter 1, including the provisions dealing with aid to state-operated and supported schools for children with disabilities. 1988 - Medicare Catastrophic Coverage Act of 1988 (P.L. 100-360) Clarified the circumstances under which Medicaid reimbursement would be available for services included in a child's individualized education program (IEP) or individualized family services plan (IFSP) under the Individuals with Disabilities Education Act. 1988 - Hearing Aid Compatibility Act of 1988 (P.L. 100-394) Required most telephones manufactured or imported into the United States to be compatible for use with telecoil-equipped hearing aids. 1988 - Temporary Child Care for Handicapped Children and Crisis Nurseries Act of 1986 (P.L. 100-403) Authorized the Secretary of Health and Human Services to make grants to states for public and nonprofit agencies to furnish temporary, non-medical care services to children with disabilities and special health care needs. 1988 - Technology-Related Assistance for Individuals with Disabilities Act (P.L. 100-407) Provided grants to states to develop statewide assistive technology programs. 1988 - Fair Housing Act Amendments (P.L. 100-430) Added persons with disabilities as a group protected from discrimination in housing and ensured that persons with disabilities are allowed to adapt their dwelling place to meet their needs. 1988 - Telecommunications Accessibility Enhancement Act of 1988 (P.L. 100-542) Allowed the Administrator of General Services Administration (GSA) to take such actions as are necessary to assure that the federal telecommunications system is fully accessible to hearing and speech impaired individuals. 1988 - Small Business Administration Reauthorization and Amendment Act of 1988 (P.L. 100-590) Enlarged the class of organizations eligible to receive Handicapped Assistance Loans to include both public and private entities. 1988 - Traffic Safety for Handicapped Individuals Act (P.L. 100-641) Required the Department of Transportation to issue regulations establishing a uniform parking system for people with disabilities. 1989 - Omnibus Budget Reconciliation Act of 1989 (P.L. 101-239) Specified, among other things, that at least thirty percent of the Maternal and Child Health Block Grant under Title V of the Social Security Act must be used to improve services for children with special health care needs. Included a major expansion in required services under Medicaid's Early and Periodic Screening, Diagnosis, and Treatment Program (EPSDT). Required the Social Security Administration (SSA) to establish a permanent outreach program for children who are blind or otherwise disabled. 1990 - Americans with Disabilities Act (ADA) (P.L. 101-336) Guaranteed the civil rights of people with disabilities by prohibiting the discrimination against anyone who has a mental or physical disability in the area of employment, public services, transportation, pubic accommodations, and telecommunications. 1990 - Carl D. Perkins Vocational Educational Applied Technology Amendments (P.L. 101-392) Rewrote the vocational legislation, eliminated the ten percent earmarking for disabled youth, but included specific language to assure students with disabilities access to qualified vocational programs and supplementary services. 1990 - Television Decoder Circuitry Act (P.L. 101-431) Required closed caption circuitry (computer chip) to be part of all televisions with screens thirteen inches or larger manufactured for sale and use in the United States. 1990 - Education of the Handicapped Act Amendments of 1990 (P.L. 101-476) Stimulated the improvement of the vocational and life skills of students with disabilities to enable them to be better prepared for the transition to adult life and services. 1990 - Individuals with Disabilities Education Act Amendments (IDEA) (within the Education of the Handicapped Act Amendments of 1990, P.L. 101-476) Renamed the Education of the Handicapped Act and reauthorized programs under the Act to improve support services to students with disabilities, especially in the areas of transition and assistive technology. 1990 - Developmental Disabilities Act Amendments of 1990 (P.L. 101-496) Maintained and further strengthened programs authorized under the Act. 1990 - Omnibus Budget Reconciliation Act of 1990 (P.L. 101-508) Established a limited purpose optional state coverage of community supported living arrangements services for persons with mental retardation and related conditions (authority has since expired). Authorized community supported living arrangements and stressed individualized support rather than the standardized services common to the ICF/MR program. Included a provision called the "access credit" that enables small businesses to claim credit against taxes for half of the first $10,000 of eligible costs of complying with the ADA. 1990 - National Affordable Housing Act (P.L. 101-625) Established a distinct statutory authority to fund supportive housing for people with disabilities, with a separate financing mechanism and selection criteria. 1991 - Individuals with Disabilities Education Act of 1991 (P.L. 102-119) Enhanced infants and toddlers program and extended the IDEA support programs. 1991 - Civil Rights Act of 1991 (P.L. 102-166) Reversed numerous U.S. Supreme Court decisions that restricted the protections in employment discrimination cases and authorized compensatory and punitive damages under Title V of the Rehabilitation Act of 1973 and ADA. 1991 - Intermodel Surface Transportation Efficiency Act of 1991 (P.L. 102-240) Authorized increased set aside funds under section 16(b) of the Act to assist facilities in meeting the special transportation accessibility needs of those who are elderly or disabled. 1992 - Rehabilitation Act Amendments of 1992 (P.L. 102-569) Included changes that increase access to state vocational rehabilitation systems for those with the most significant disabilities, enabled consumers to have greater choice and control in the rehabilitation process, and provided opportunities for career advancement. 1993 - Family and Medical Leave Act (P.L. 103-3) Allowed workers to take up to twelve weeks of unpaid leave to care for newborn and adopted children and family members with serious health conditions or to recover from serious health conditions. 1993 - National Voter Registration Act (P.L. 103-31) Required states to liberalize their voter registration rules to allow people to register to vote by mail, when they apply for driver's licenses, or at offices that provide public assistance and programs for individuals with disabilities such as vocational rehabilitation programs. 1993 - National and Community Service Trust Act of 1993 (P.L. 103-82) Established a national service program, including tuition assistance and a living allowance for individuals age seventeen and older who volunteer part-time or full-time in community service programs. 1994 - Technology-Related Assistance for Individuals with Disabilities Act Amendments (P.L. 103-218) Reauthorized the 1988 "Tech Act," that was established to develop consumer-driven, statewide service delivery systems that increase access to assistive technology devices and services to individuals of all ages with disabilities. The 1994 amendments emphasize advocacy, systems changes activities and consumer involvement. 1994 - Goals 2000: Educate America Act of 1994 (P.L. 103-227) Provided a framework for meeting national educational goals and carrying out systemic school reform for all children, including children with disabilities. 1994 - Developmental Disabilities Assistance and Bill of Rights Amendments of 1993 (P.L. 103-230) Rewrote and updated provisions pertaining to State Planning Councils and extended and strengthened provisions pertaining to protection and advocacy systems, university affiliated programs, and programs of national significance. 1994 - School-to-Work Opportunities Act of 1994 (P.L. 103-239) Authorized funds for programs to assist students, including students with disabilities, in the transition from school to work. 1994 - Improving America's Schools Act of 1994 (IASA) (P.L. 103-382) Reauthorized the Elementary and Secondary Education Act (ESEA), which provides the framework of federal grants to states for elementary and secondary education programs. Among other provisions, the legislation amends the Individuals with Disabilities Education Act to establish a new state program supporting statewide systems of support for families of children with disabilities. 1995 - Child Abuse Prevention and Treatment Act (CAPTA) Amendments of 1995 (P.L. 104-235) Included new family resource and support program that supports state efforts to develop, operate, expand and enhance a network of community-based, prevention-focused, family resource and support programs which would be equipped to address, among other things, the additional family support needs of families with children with disabilities. 1996 - Telecommunications Act of 1996 (P.L. 104-104) Required telecommunications manufacturers and service providers to ensure that equipment is designed, developed, and fabricated to be accessible to and usable by individuals with disabilities, if readily achievable. 1996 - Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1996 (P.L. 104-183) Extended authority to fund Developmental Disabilities Councils, Protection and Advocacy Systems, University Affiliated Programs, and Projects of National Significance. 1996 - Health Insurance Portability and Accountability Act of 1996 (P.L. 104-191) Improved access to health care for twenty-five million Americans by guaranteeing that private health insurance is available, portable, and renewable; limiting pre-existing condition exclusions; and increasing the purchasing clout of individuals and small employers through incentives to form private, voluntary coalitions to negotiate with providers and health plans. 1996 - Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (P.L. 104-193) Provided a new, more restrictive definition of disability for children under the Supplemental Security Income program (SSI), focusing on functional limitations, mandating changes to the evaluation process for claims and continuing disability reviews, and requiring redeterminations to be performed before a child turns eighteen. 1996 - Mental Health Parity Act of 1996 (P.L. 104-204) (provisions implementing Act added in P.L. 105-34) Included a provision that prohibits insurance companies from having lower lifetime caps for treatment of mental illness compared with treatment of other medical conditions. 1997 - Individuals with Disabilities Education Act Amendments of 1997 (P.L. 105-17) Included the first major changes to Part B since enactment in 1975, extended the early intervention program, and included a significant streamlining of the discretionary programs. 1997 - Balanced Budget Act of 1997 (P.L. 105-33) Established the State Children's Health Insurance Program (SCHIP) to expand health insurance coverage for low-income children not covered by Medicaid; Authorized the Social Security Administration to make redeterminations of childhood SSI recipients who attain age eighteen using adult disability criteria one year after they turn eighteen; Provided that states must continue Medicaid coverage for disabled children who were receiving SSI benefits as of August 22, 1996 and would have been eligible except their eligibility terminated because they did not meet the new SSI childhood disability criteria; Permitted states to allow workers with disabilities whose family income is less than 250% of poverty to buy into Medicaid (and pay premiums based on sliding scale of income); Eliminated the requirement of prior institutionalization with respect to habilitation services provided under the Medicaid Home and Community-Based Waiver; Provided that "qualified alien" noncitizens lawfully residing in the United States who received SSI on August 22, 1996, would remain eligible for SSI-i.e., eligibility "grandfathered"; Provided that "qualified aliens" lawfully residing in the United States on August 22, 1996 would be eligible for SSI if they meet the SSI definition of disability or blindness; Directed the Secretary in consultation with specified organizations to conduct a study of Medicaid's EPSDT program; Permitted states to mandate adults (including adults with disabilities) into Medicaid managed care by an amendment to state Medicaid plan and not by having a waiver approved. Exempts SSI eligible kids, certain foster care and adopted kids, and certain Native Americans; and Directed the Secretary to undertake a study of any special challenges of serving children with special health care needs and chronic conditions in Medicaid managed care. 1998 - Workforce Investment Act of 1998 (P.L. 105-220) Consolidated many of the federal job training programs and provided workforce investment activities through statewide and local workforce investment systems. The law also reauthorized the Rehabilitation Act of 1973 by providing greater linkages with the generic workforce investment systems, increased consumer choice and involvement, and greater accountability (outcome measures). 1998 - Assistive Technology Act of 1998 (P.L. 105-394) Reauthorized and extended the programs formerly authorized under the Technology-Related Assistance for Individuals with Disabilities Act, while limiting to thirteen years a state's eligibility for a systems change grant. 1998 - Crime Victims and Disabilities Awareness Act (P.L. 105-301) Directed the Attorney General to conduct a study to examine the nature and extent of crimes committed against people with disabilities. 1999 - Ticket to Work and Work Incentives Improvement Act (P.L. 106-170) Provided health care and employment preparation and placement services to individuals with disabilities that will enable those individuals to do the following: Reduce their dependency on cash benefit programs; Encourage states to adopt the option of allowing individuals with disabilities to purchase Medicaid coverage that is necessary to enable such individuals to maintain employment; Provide individuals with disabilities the option of maintaining Medicare coverage while working; and Establish a return to work ticket program that will allow individuals with disabilities to seek the services necessary to obtain and retain employment and reduce their dependency on cash benefit programs. APPENDIX 3 WEBSITES FOR FEDERAL DISABILITY-RELATED LEGISLATION, REGULATIONS, AND COURT CASES: Access Board: Provides information relating to accessibility for people with disabilities. Updated Monthly. URL: http://www.access-board.gov ADA Technical Assistance Program (ADATA): A comprehensive resource for information on the Americans with Disabilities Act. Updated weekly. URL: http://www.adata.org Disability and Business Technical Assistance Centers (DBTACs): The ten regional centers provide information, training, and technical assistance to employers, people with disabilities, and other entities with responsibilities under the ADA. Updated weekly to monthly. URL: http://www.adata.org/text-dbtac.html Equal Employment Opportunity Commission (EEOC) Facts Page: Provides information and technical assistance relating to employment and disabilities. Updated weekly to monthly. URL: http://www.eeoc.gov Federal Communications Commission's Disabilities Issues Task Force Home Page: Telecommunications accessibility information line. Updated monthly. URL: http://www.fcc.gov/cib/dro Health Care Finance Administration (HCFA) of the Department of Health and Human Services: Federal agency that administers the Medicare, Medicaid, and Child Health Insurance Programs. Updated weekly. URL: http://www.hcfa.gov The Department of Health and Human Services (DHHS), Office of Civil Rights: Promotes and ensures that people have equal access to and opportunity to participate in and receive services in all HHS programs without facing unlawful discrimination. Updated weekly to monthly. URL: http://ocr.hhs.gov Health Resources and Services Administration (HRSA) of the Department of Health and Human Services: An agency that helps provide health resources for medically underserved populations. Updated weekly to monthly. URL: http://www.hrsa.dhhs.gov Housing and Urban Development (HUD), Department of: Provides information and technical assistance relating to housing and disabilities. Updated weekly to monthly. URL: http://www.hud.gov/disabled.html Job Accommodation Network (JAN): JAN is an information network and consulting resource that enables qualified workers with disabilities to be hired or retained. It brings together information from many sources about practical ways of making accommodations for employees and applicants with disabilities. Updated weekly to monthly. URL: http://janweb.icdi.wvu.edu Department of Justice (ADA Home Page) (DOJ): Americans with Disabilities Act information and technical assistance line. Updated weekly. URL: http://www.usdoj.gov/crt/ada/adahom1.htm The Department of Labor (DOL): Provides information and technical assistance relating to the American workforce and disabilities. Updated weekly to monthly. URL: http://www.dol.gov National Council on Disability (NCD): Promotes policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature of severity of the disability, and empowers individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. Updated monthly. URL: http://www.ncd.gov National Institute on Disability and Rehabilitation Research (NIDRR) of the Department of Education: Provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. Updated weekly to monthly. URL: http://www.ed.gov/offices/OSERS/NIDRR Office of Special Education and Rehabilitative Services (OSERS) of the Department of Education: Administers programs and projects relating to the provision of a free appropriate public education to all children, youth and adults with disabilities, from birth through age twenty-one. Updated weekly to monthly. URL: http://www.ed.gov/offices/OSERS Presidential Task Force on Employment of Adults with Disabilities (PTFEAD) of the Department of Labor: The task force evaluates existing Federal programs to determine what changes, modifications, and innovations may be necessary to remove barriers to employment opportunities faced by adults with disabilities. Updated weekly to monthly. URL: http://www.2dol.gov/dol/_sec/public/programs/ptfead/main.ht m Rehabilitation Services Administration (RSA) of the Department of Education: Lists overseas programs that enable individuals with physical or mental disabilities to obtain employment through such supports as counseling, medical care, job training, and other individualized services. Updated weekly to monthly. URL: http://www.ed.gov/offices/OSERS/RSA Social Security Administration (SSA) - Disability Information Page: Provides information and technical assistance relating to social security and disabilities. Updated weekly to monthly. URL: http://www.ssa.gov/odhome/odhome.htm Thomas: An on-line site that provides legislative information: Text of bills, committee reports, historical documents, links to the U.S. Senate, House of Representatives, Executive, Judicial, and State/Local governments. Updated daily. URL: http://thomas.loc.gov Transportation, Department of: Provides information and technical assistance relating transportation and disabilities. Updated weekly to monthly. URL: http://www.fta.dot.gov "HOT" LEGAL SITES FOR DISABILITY COURT CASES: Findlaw: On-line access to legal resources. This site is very user friendly. Updated weekly. URL: http://www.findlaw.com Legal Information Institute (LII): On-line access to legal documents. Excellent resource. Updated weekly to monthly. URL: http://www.law.cornell.edu/lii.html APPENDIX 4 GLOSSARY OF ACRONYMS: ADA is an acronym for the Americans with Disabilities Act. The ADA is an omnibus civil rights statute providing a clear and comprehensive national mandate for the elimination of discrimination against persons with disabilities. It provides clear, strong, consistent, and enforceable standards addressing discrimination against such individuals. Areas covered by the ADA include employment (Title I), public services and transportation (Title II), public accommodations (Title III), and telecommunications-relay systems for persons who have communication impairments (Title IV). CHIP is an acronym for Children's Health Insurance Program. CHIP is codified in Title XXI of the Social Security Act. CHIP entitles states to $40 billion over the next ten years to provide health insurance for low-income children who do not qualify for Medicaid, including children with disabilities. EPSDT is an acronym for Early and Periodic Screening, Diagnosis, and Treatment. EPSDT is a mandatory service under the Medicaid program. Under EPSDT, children are screened for health deficiencies, diagnosed, and then treated to the extent that a service is medically necessary. FAPE is an acronym for "free appropriate public education" under the Individuals with Disabilities Education Act. FAPE means special education and related services provided without charge in conformity with an individualized education program. IDEA is an acronym for the Individuals with Disabilities Education Act. The purposes of this Act are to: Ensure that all children with disabilities have available to them a free and appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for employment and independent living. It also ensures that the rights of children with disabilities and parents of such children are protected, and it assists states and local educational agencies to provide for the education of such children (Part B of the IDEA); Assist states in implementation of a statewide, comprehensive, coordinated, multidisciplinary, interagency system of early intervention services for infants and toddlers with disabilities and their families (Part C-formerly Part H-of the IDEA); Ensure that educators and parents have the necessary tools to improve educational results for children with disabilities by supporting systemic change activities, coordinated research and personnel preparation, coordinated technical assistance, dissemination, and support, and technology development and media services (Part D of the IDEA). IEP is an acronym for Individualized Education Program. Every child with a disability is entitled to an IEP under the IDEA. An IEP is a written statement that includes a statement of the child's present level of educational performance; measurable annual goals, including benchmarks or short-term objectives; a statement of special education, related and supplementary aids and services provided to the child; a statement of needed transition services; and periodic report cards. NIDRR is an acronym for The National Institute on Disability and Rehabilitation Research in the U.S. Department of Education. NIDRR provides research, demonstration projects, training, and related activities to maximize the full inclusion, integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities of all ages. SECTION 504 is an acronym for section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination on the basis of disability by recipients of federal financial assistance. SSDI is an acronym for the Social Security Disability Income program, established under Title II of the Social Security Act. SSDI provides federal disability insurance benefits for workers who have contributed to the Social Security Trust Fund and become disabled or blind before retirement age. Spouses with disabilities and dependent children of fully insured workers (often referred to as the primary beneficiary) also are eligible for disability benefits upon the retirement, disability, or death of the primary beneficiary. SSI is an acronym for Supplemental Security Income program established under Title XVI of the Social Security Act. SSI is a federally administered cash assistance program for individuals who are aged, blind, or disabled and meet a financial needs test (income and resource limitations). The Emerging Disability Policy Framework: A Guide for Developing Public Policy For Persons with Disabilities Iowa Law Review August 2000, Volume 85/No. 5 http://www.childrenshospital.org/ici http://www.comop.org http://www.uiowa.edu/~lhpdc/work/index.html Prepared By: Robert Silverstein I. Introduction * How do policy makers view/treat people with disabilities? * The disability policy framework can be used: o As a lens, guidepost, benchmark to assess social policy from the viewpoint of persons with disabilities o To look at how persons with disabilities and their families are addressed in public policy o As a measure for expanding and improving public policy for persons with disabilities * The disability policy framework can be used to look at all types of public policy such as o Generic programs and policies that include people with and without disabilities o Disability-specific programs and policies focused solely on persons with disabilities and their families II. Old Versus New Paradigm of Disability Policy A. Old Paradigm 1. View/treat people with disabilities as "defective" and in need of "fixing" 2. Disability connotes "unable" and "incapable" 3. Approach: out of sight, out of mind 4. Examples * States laws which stated that persons with specified disabilities are "unfit for citizenship" * States laws that required sterilization of the "feebleminded" with the aim of "extinguishing their race" * States laws that permitted school districts to exclude children with disabilities when school officials determined that it was too much of a burden or "inexpedient" to serve them or because they produced a "nauseating" effect on others * State laws that required persons with disabilities to be placed in institutions because they were a "menace to society" B. New paradigm 1. Disability is a physical or mental condition that affects a person's ability to function 2. Focus on how a person with a disability interacts with the world 3. New core precept-disability is a natural part of the human experience that in no way diminishes a person's right to fully participate in all aspects of American life 4. Goal of public policy is to determine how society can "fix" the environment to provide effective and meaningful opportunities. III. Goals, Core Policies, Methods of Administration and Support Program Constituting the Disability Policy Framework A. Goals of Disability Policy 1. Equality of Opportunity 2. Full Participation 3. Independent Living 4. Economic Self-sufficiency B. Core Policies 1. Equality of Opportunity * Individualization (treat people on the basis of facts and objective evidence, not generalizations, stereotypes, or fear ignorance and prejudice) * Genuine, effective and meaningful opportunity (provide reasonable accommodations, make programs accessible, and make reasonable modifications to policies) * Inclusion and integration (guarantee contact with nondisabled persons, avoid unnecessary and unfair separation and segregation) 2. Full Participation * Involvement in decision-making by persons with disabilities and their families at the individual and systems levels * Ensure informed choice * Provide for self-determination and empowerment * Recognize self-advocacy 3. Independent Living * Recognize independent living as a legitimate outcome of public policy * Provide for independent living skills development * Provide for long-term services and supports, including personal assistant services and assistive technology devices and services * Provide cash assistance 4. Economic Self-sufficiency * Recognize economic self-sufficiency as a legitimate outcome of public policy * Support systems providing employment-related services * Provide cash assistance with work incentives and other forms of assistance * Devise a tax policy providing incentives to employers and employees C. Methods of Administration 1. Methods of Administration, In General 2. State and Local Plans, Applications, and Waivers 3. Monitoring and Enforcement by Government Agencies 4. Procedural Safeguards 5. Accountability for Results (Outcome Measures) 6. Representation at the Individual and Systems Level 7. Single Line of Responsibility/Coordination and Collaboration Among Agencies 8. Service Coordination 9. Financing Service Delivery 10. Privacy, Confidentiality, Access to Records, and Informed Consent 11. Comprehensive System of Personnel Development and Personnel Standards 12. Racial, Ethnic, and Linguistic Diversity 13. Fiscal Provisions 14. Financial Management and Reporting Provisions D. Program Supports 1. Systems Change Initiatives 2. Technical Assistance 3. Research Robert Silverstein, Director Center for the Study and Advancement of Disability Policy (CSADP) 1730 K Street, NW, Suite 1212 Washington, DC 20006 202.223.5340 (V/TTY) 202.467.4179 (FAX) Email: Bobby@csadp.org Revised: October 20, 2000 Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy By: Robert Silverstein Bobby Silverstein, Director of the Center for the Study and Advancement of Disability Policy (former Staff Director and Chief Counsel of the U. S. Senate Subcommittee on Disability Policy chaired by Tom Harkin) recently completed an article published in the Iowa Law Review (August 2000, Vol. 85/No. 5) entitled Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy. The Article describes the precept, goals, and core policies of our nation's laws relating to people with disabilities. The purpose of the Article is to provide a framework that can be used as a lens or guidepost to design, implement, and evaluate generic, as well as disability-specific, public policies and programs to ensure meaningful inclusion of people with disabilities in mainstream society. Appendix 1 to the Article is a self-contained document, which provides an overview of the Emerging Disability Policy Framework. The overview is written in a narrative outline format and can serve as a handout for training purposes. Appendix 2 describes major disability-related legislation enacted between 1956 - 2000. The Article's intended audiences include federal, state and local policymakers, persons with disabilities, their families and advocates, researchers, service providers, and university professors teaching courses that include disability policy. The Article and the overview are available on-line through websites operated by two Rehabilitation Research and Training Centers (RRTC) funded by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education. * http://www.comop.org (RRTC on Workforce Investment and Employment Policy for Persons with Disabilities (No. H133B980042) operated by Community Options, Inc. * http://www.childrenshospital.org/ici (RRTC on State Systems and Employment (No. H133B30067) operated by the Institute for Community Inclusion In addition, the Article may be found at a website supported by a grant from the Robert Wood Johnson Foundation. http://www.uiowa.edu/~lhpdc/work/index.html (Comprehensive, Person-Centered State Work Incentive Initiatives: A Resource Center for Developing & Implementing Medicaid Buy In Programs & Related Employment Initiatives for Persons with Disabilities) Youth Leadership Forum YOUTH LEADERSHIP FORUM LIST OF STATE CONTACTS National Coordinator Alicia Epstein Office of Disability Employment Policy 1331 F Street NW Washington D.C. 20004 (202) 376-6205 (TTY) (202) 376-6200 (V) (202) 376-6868 (FAX) ALABAMA (1999) Angeline H. Pinckard Alabama Governor's Committee 2129 East South Boulevard P.O Box 11586 Montgomery, AL 36111-0586 (334) 613-2215 (Phone) (334) 288-1104 (Fax) ARKANSAS (2000) Barry M. Vuletich Governor's Commission on People with Disabilities 1616 Brookwood Dr. Little Rock, AR 72202 (501) 296-1626 (Phone) (501) 296-1655 (Fax) ARIZONA (2002) Jim Bruzewski Executive Director Governor's Committee on Employment of People with Disabilities 1012 E. Willetta, SRI-IB Phoenix, AZ 85006 (602) 239-4762 (Phone) (602) 239-5256 (Fax) CALIFORNIA (1992) Catherine Kelly Baird Executive Director Govern