IL NET an ILRU/NCIL National Training and Technical Assistance Project Expanding the Power of the Independent Living Movement IL 101: Terms and Leaders in the Independent Living Movement A National Teleconference Participant's Manual February 13, 2002 Contributors to the training materials: Julia Sain Eileen Teachout-Smith Kristy Langbehn Darrell Lynn Jones Raweewan Buppapong Carri George Richard Petty Dawn Heinsohn 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 (V/TTY - toll free) http://www.ilru.org ncil@ncil.org http://www.n cil.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. IL 101: Terms and Leaders in the Independent Living Movement A National Teleconference Participant's Manual Table of Contents Agenda i About the Trainers ii List of Trainers and IL NET Staff iii About ILRU v About NCIL v About IL NET vi IL 101 Terms and Leaders in the IL Movement 1 Overheads 9 Handy Charts 21 IL 101: Terms and Leaders in the Independent Living Movement AGENDA [Questions & Answers periods will be integrated at various points] Welcome and Introduction Purpose of Workshop Julia Sain Important Disclaimer Eileen Teachout-Smith Terms and Categories Julia & Eileen Wrap-up ABOUT THE TRAINERS Julia Sain has been working at Programs for Accessible Living in Charlotte, North Carolina since 1984. Currently she is the Executive Director. Over the years, Julia has performed many training activities for consumers, business leaders, government personnel, human resource professionals, and CIL staff and Board Members. She founded a local chapter of the Registry of Interpreters for the Deaf (RID). She is currently on the North Carolina SILC as the CIL representative. Julia also serves as the Alternate Region IV Representative to NCIL and is a member of the Rehabilitation Act Subcommittee. Eileen Teachout-Smith has been the Assistant Director for Programs for Accessible Living in Charlotte, North Carolina since 1997. She has worked in the independent living movement since 1985, being involved in grassroots advocacy, creating and implementing programs, and teaching the philosophy of IL and peoples' rights to consumers as well as the business and professional communities. She serves on local and state boards, including the Executive Board of the North Carolina SILC, chairing the Part C committee and being one of the writers of the new 3-year State Plan for IL. TRAINERS Julia Sain Executive Director Programs for Accessible Living 5701 Executive Center Drive, Suite 320 Charlotte, North Carolina 28212 704-537-0550 (Voice) 704-537-0550 (TTY) 704-566-0507 (FAX) jssain@mindspring.com Eileen Teachout-Smith Assistant Director Programs for Accessible Living 5701 Executive Center Drive, Suite 320 Charlotte, North Carolina 28212 704-537-0550 (Voice) 704-537-0550 (TTY) 704-566-0507 (FAX) eilmts_freetobe@mindspring.com 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. IL 101 Terms and Leaders in the IL Movement IL 101 Terms and Leaders in the IL Movement by Julia Sain It has been a practice of Programs for Accessible Living for several years that we take a member of our Board of Directors to the annual NCIL conference in Washington, DC. Those board members who have attended receive an education about the philosophy of independent living and the issues we face that I could never have time to provide to them. In 2000, the President-Elect of the board agreed to attend. He has been a member of our board for many years and is an active participant in many of our advocacy efforts. He attended all the events at NCIL, including several workshops. When he met me for the annual meeting on Saturday afternoon, at the end of a long conference week, he handed me a sheet of paper with 32 terms listed. He said, "these are words and terms I have heard this week that I do not know. Please make me a sheet of definitions." When I saw the list, I was embarrassed. There were so many basic terms. I realized I had not taken the time to fully educate my board members on the important issues we face or I had been talking about the issues without explaining the concepts. I completed that document for him, but it left me with a nagging thought. I wondered how many other people attended the NCIL conference each year and did not know the meaning of these terms. With that concept, I submitted a workshop proposal for the 2001 NCIL conference entitled IL 101 Terms and Leaders in the IL Movement. Not only was I pleased when the workshop was approved, but I was astonished when 115 individuals signed up to attend! Apparently, the need for this information is nationwide. I am honored that ILRU asked me to develop this information to be used in a reference guide so CILs across the country can provide basic information to staff members, board members, and consumers. FEDERAL INDEPENDENT LIVING The US Department of Education (DOE) is the federal department in whose budget money is made available for Independent living. DOE houses several agencies. The Office of Special Education and Rehabilitation Services (OSERS) supports programs that assist in educating children with disabilities, provides for the rehabilitation of youth and adults with disabilities, and supports research to improve the lives of individuals with disabilities. Under OSERS are two programs that assist with independent living: 1) The National Institute on Disability Rehabilitation and Research (NIDRR) conducts the research work of OSERS. It is a good source for start-up grants to assist in new programming. 2) The Rehabilitation Services Administration (RSA) is responsible for planning, developing and implementing the rules, policies and guidelines for several programs, including Vocational Rehabilitation and independent living. RSA monitors and assists with the distribution of Part B and Part C dollars. (These are two parts of Title VII of the 1992 Reauthorization of the 1973 Rehabilitation Act). Part B money is assigned to each state for the purpose of filling gaps in independent living services. The dissemination of that money is determined by the Statewide Plan for Independent Living (SPIL) which is written by the Statewide Independent Living Council (SILC) and the Designated State Unit (DSU) in each state. (Most DSUs are the Division of Vocational Rehabilitation In the state). Some states have two DSUs. Part C money is given directly to centers for independent living (CILs). CILs must meet the Assurances and Standards set forth in the 1992 Reauthorization. FEDERAL AGENCIES There are several federal agencies that assist with advocacy for people with disabilities. The agencies responsible for enforcement of ADA Titles I, II, and III are the Equal Employment Opportunity Commission (EEOC) and the US Department of Justice (D0J). These, and many other federal agencies, have a specific office responsible for investigating ADA and other civil rights issues. It is the Office of Civil Rights (OCR). When contacting a federal agency for information about discrimination, it is a good idea to begin with the agency's OCR. The Department of Health and Human Services (DHHS) is the federal government's principal agency for protecting the health of all Americans and providing essential human services. The agency has over 300 programs, including National Institutes on Health and the Centers for Disease Control. One of their agencies Heath Care Financing Administration (HCFA) administers Medicare and Medicaid. HOUSING Housing and Urban Development (HUD) is the federal agency responsible for insuring that every American has a decent, safe, sanitary home and suitable living environment. They administer several programs that assist individuals who need affordable housing. One way HUD assists In providing home modifications to insure accessibility is the Community Development Block Grants (CDBG) program. CDBG funds are available to communities to pay for the building of ramps, accessible restrooms, etc. Some municipalities receive the CDBG funds and provide the modifications. In other areas, CILs receive CDBGs and are able to pay for home modification. The foremost advocacy organization for accessible, affordable housing is the Disability Rights Action Coalition for Housing (DRACH). This is a grassroots network of people with disabilities, disability advocates, organizations, and customers of federal programs who have extensive experience in local and national housing arenas. LEGISLATION ADA The Americans with Disabilities Act (ADA) was passed and signed into law by former President George Bush on July 26, 1990. This is civil rights legislation that insures individuals with disabilities an opportunity to be treated as equal citizens in employment, municipal and state programs, for-profit businesses, and telecommunications. The individual who crafted the initial language for the ADA is, Robert Burgdorf, Jr., currently a law professor at the David Clark School of Law at the University of the District of Columbia. ADAAG When the ADA was signed into law, it mandated that the Architectural Barriers and Transportation Compliance Board (ATBCB) would write the accessibility guidelines that would specify "how high, how wide, how deep, and how many" defines accessibility. The resulting document is called the Americans with Disabilities Act Accessibility Guidelines (ADAAG). Garrett On February 21, 2001, the US Supreme Court handed down a ruling in the case of University of Alabama v. Garrett (Garrett). Ms. Garrett was a nurse supervisor who worked at the University of Alabama and was, therefore, an employee of the state of Alabama. She was diagnosed with breast cancer and underwent treatment. Upon her return to work, the university refused to let her work in the same position as before. Ms. Garrett sued, and the case ended up before the Supreme Court in October 2000. The 5-4 ruling held that state employees do not have the right to sue their employers under the ADA. IDEA The Individuals with Disabilities Education Act (IDEA), also known as Public Law 94-142, provides that each child with a disability has the right to a free and appropriate public education in the least restrictive environment MiCASSA A new bill has been proposed in congress called the Medicaid Community Attendant Services and Supports Act (MiCASSA). If this bill becomes law, it will allow Medicaid dollars to "follow the person" so attendant and support services could be provided in the home rather than only in a nursing home. Olmstead MiCASSA would go a long way to help states comply with the requirements under the Supreme Court decision in Olmstead v. L.C. (Olmstead). In 1999, the Supreme Court ruled that individuals receiving Medicaid must be able to live in the community and out of state institutions given certain guidelines. Each state is to develop a plan of how to Implement this decision. Section 504 The 1973 Rehabilitation Act (Rehab Act) contained Section 504, which states: "No otherwise qualified handicapped individual in the United States shaIl, solely by reason of his handicap, be excluded from participation in, be denied the benefits of, or be subject to discrimination under any program or activity receiving Federal financial assistance." In future reauthorizations of the act, Part B and Part C monies were made available. TWWIIA and WIA Two pieces of legislation assist individuals as they seek vocational assistance: The Ticket to Work and Work Incentives Improvement Act (TWWIIA) and The Workforce Investment Act (WIA). TWWIIA allows for individuals receiving SSI and SSDI to choose an employment network to help them find and keep a job. It also establishes incentives for someone to attempt employment without losing all their benefits. WIA establishes one-stop employment locations for comprehensive information and assistance. EDUCATION Several organizations provide quality education within the independent living movement DREDF Disability Rights Education and Defense Fund (DREDF) is the national law and policy center dedicated to protecting and advocating the civil rights of people with disabilities. When the ADA was passed DREDF was given the responsibility of providing comprehensive ADA training to advocates in each state. DBTAC Disability Business and Technical Assistance Centers (DBTAC) provide information, materials, and training. There is one DBTAC in each region. They also have money to assist CILs and other IL groups in providing training in their areas. IL Net IL Net is a cooperative effort between ILRU and NCIL to provide training, technical assistance, and publications. ILRU Independent Living Research and Utilization Project (ILRU) is a national center for training, research, and technical assistance. RRCEP Regional Rehabilitation Continuing Education Programs (RRCEP) operate in each region. Some regions have two RRCEPs one to assist individuals working in the field of independent living and the other for individuals working in the field of vocational rehabilitation. They provide training and technical assistance, primarily, to employees of CILs and other agencies/organizations. RTC Research and Training Center on Independent Living (RTC) promotes projects that enhance independent living. RTC Is located at the University of Kansas. ORGANIZATIONS AAPD American Association of People with Disabilities (AAPD) is a membership organization that is non-profit, non-partisan, cross-disability and whose goals are unity, leadership and Impact. ADAPT Americans with Disabilities for Attendant Programs Today (ADAPT) is the foremost community organizing group in the IL movement. It has a long history of using civil disobedience and similar non-violent direct action tactics to achieve its goals. ADAPT played a major role in gaining passage of the ADA and is working now on MICASSA and de-institutionalization of individuals from nursing homes. One of the main leaders of ADAPT is Bob Kafka, one of the best community organizers in the country. APRIL The Association of Programs for Rural Independent Living (APRIL) is a membership organization dedicated to research and training focused on independent living and rural rehabilitation issues. Justice for All Justice for All was formed to defend and advance disability rights and programs. One JFA goal is to work with national and state organizations of people with disabilities to get the word from Washington D.C. out to the grassroots. Justin Dart and Fred Fay are the guiding forces behind JFA. Justin Dart is the "Father of the ADA" and speaks out against any issue that would diminish the rights and respect of people with disabilities. Fred Fay has been sending out emails and faxes for many years, making sure that people on the grassroots level are kept informed when their rights are in jeopardy. Overheads FEDERAL INDEPENDENT LIVING US Department of Education (DOE) Office of Special Education and Rehabilitation Services (OSERS) Rehabilitation Services Administration (RSA) National Institute on Disability Rehabilitation and Research (NIDRR) Part B Statewide Independent Living Councils (SILC) Part C Centers for Independent Living FEDERAL US Department of Justice (DOJ) Equal Employment Opportunity Commission (EEOC) US Department of Health and Human Services (DHHS) Health Care Financing Administration (HCFA) Office of Civil Rights (OCR) HOUSING Federal Housing and Urban Development (HUD) Community Development Block Grants (CDBG) Advocacy Organization Disability Rights Action Coalition for Housing (DRACH) LEGISLATION Americans with Disabilities Act (ADA Robert Burgdorf, Jr. ADA Accessibility Guidelines (ADAAG) Architectural Barriers and Transportation Compliance Board (ATBCB) University of Alabama v. Garrett (Garrett) Individuals with Disabilities Education Act (IDEA) Medicaid Community Attendant Services and Supports Act (MiCASSA) Olmstead v. L.C. (Olmstead) 1973 Rehabilitation Act (Rehab Act) Ticket to Work Work Incentive Improvement Act (TWWIIA) Workforce Investment Act (WIA) EDUCATION Disability Rights Education and Defense Fund (DREDF) Disability Business and Technical Assistance Centers (DBTAC) IL Net Independent Living Research and Utilization Project (ILRU) Regional Rehabilitation Continuing Education Program (RRCEP) Research and Training Center on Independent Living (RTC) ORGANIZATIONS American Association of People with Disabilities (AAPD) Americans with Disabilities for Attendant Programs Today (ADAPT) Bob Kafka Association of Programs for Rural Independent Living (APRIL) Justice for All Justin Dart National Council on Disability (NCD) National Council on Independent Living (NCIL) Mike Oxford, Pres. Anne-Marie Hughey, Exec. Dir. National Organization on Disabilities (NOD) Not Dead Yet Paralyzed Veterans of America (PVA) World Institute on Disability (WID) STATE Client Assistance Program (CAP) Designated State Unit (DSU) National Association of Protection and Advocacy Systems (NAPAS) Protection and Advocacy Office (P&A) CONTACT INFORMATION FOR THE PRESENTERS Eileen Teachout-Smith Email eilmts_freetobe@mindspring. com Julia Sain Email jssain@mindspring.com (704) 537-0550 (v/tty) Handy Charts HANDY CHARTS AAPD Justice for All ADA Kafka, Bob ADAAG McDonald, Gina ADAPT MiCASSA APRIL NAPAS ATBCB NCD Bristo, Marca NCIL Burgdorf Jr, Robert NIDRR CAP NOD CDBG Not Dead Yet CIL OCR Dart, Justin Olmstead DBTAC OSERS DHHS Oxford, Michael DOE P&A's DOJ Part B DRACH Part C DREDF PVA DSU Rehab Act EEOC Roberts, Ed Garrett RRCEP HCFA RSA Heumann, Judy RTC HUD SILC Hughey, Anne-Marie TWWIIA IDEA WIA IL Net WID ILRU ABBREV. NAME CATEGORY CONTACT INFORMATION AAPD American Association of People with Disabilities Organizations www.aapd.com ADA Americans with Disabilities Act Legislation www.usdoj.gov/crt/ada/adahom1.htm ADAAG ADA Accessibility Guidelines Legislation www.usdoj.gov/crt/ada/adaag/html/adaag.htm ADAPT Americans with Disabilities for Attendant Programs Today Organizations www.adapt.org APRIL Association of Rural Programs for Independent Living Organizations www.ruralinstitute.umt.edu/april ATBCB Architectural Transportation Barriers and Compliance Board Legislation www.access-board.gov CAP Client Assistance Program State CDBG Community Development Block Grant Housing www.hud.gov/offices/cpd/communitydevelopment CIL Center for Independent Living Federal - IL www.ilru.org/jump1.htm DBTAC Disability Business Technical Assistance Center Education 1-800-949-4ADA (1-800-949-4232) DHHS US Department of Health and Human Services Federal www.os.dhhs.gov DOE US Department of Education Federal - IL www.ed.gov DOJ US Department of Justice Federal www.doj.gov DRACH Disability Rights Action Coalition for Housing Housing www.libertyresources.org/housing/nac DREDF Disability Rights Education and Defense Fund Education www.dredf.org DSU Designated State Unit State EEOC Equal Employment Opportunity Commission Federal www.eeoc.gov Garrett University of Alabama v. Garrett No. 99-1240 Legislation www.bazelon.org/alabamabreif.html HCFA Health Care Financing Administration Federal www.hcfa.gov HUD Housing and Urban Development Housing www.hud.gov IDEA Individuals with Disabilities Education Act Legislation www.ed.gov/office/OSERS/OSEP/IEP_Guide IL Net Education www.ncil.org/01ilnet.htm ILRU Independent Living Research and Utilization Project Education www.ilru.org Justice for All Organizations www.jfanow.org MiCASSA Medicaid Community Attendant Services and Supports Act Legislation www.adapt.org/casaintr.htm NAPAS National Association of Protection and Advocacy Systems State www.protectionandadvocacy.com NCD National Council on Disability Organizations www.ncd.gov NCIL National Council on Independent Living Organizations www.ncil.org NDY Not Dead Yet Organizations www.notdeadyet.org NIDRR National Institute on Rehabilitation and Research Federal - IL www.ed.gov/offices/OSERS/NIDRR NOD National Organization on Disabilities Organizations www.nod.org OCR Office of Civil Rights Federal Olmstead Olmstead v. L.C. No. 98-536 Legislation www.supct.law.cornell.edu/supct/html/98-536.25.html OSERS Office of Special Education and Rehabilitation Services Federal - IL www.ed.gov/offices/OSERS P&A's Protection and Advocacy Office State Part B Title VII Part B of the 1973 Rehab Act Federal - IL Part C Title VII Part C of the 1973 Rehab Act Federal - IL PVA Paralyzed Veterans of America Organizations www.pva.org Rehab Act 1973 Rehabilitation Act as amended in 1992 and 1998 Legislation http://trfn.clpgh.org/srac/reports/guide/ RRCEP Regional Rehabilitation Continuing Education Programs Education www.ed.gov/offices/OSERS/RES/programs/RT/catrcep. html RSA Rehabilitation Services Administration Federal - IL www.ed.gov/offices/OSERS/RSA RTC Research and Training Center on Independent Living Education www.rtcil.org SILC Statewide Independent Living Council Federal - IL www.ilru.org/silc/silcdir.index.html TWWIIA Ticket To Work - Work Incentives Improvement Act Legislation www.ssa.gov/work/index2.html WIA Workforce Investment Act Legislation www.usdoj.gov/crt/508/508law.html WID World Institute on Disabilities Organizations www.wid.org