IL NET: an ILRU/NCIL National Training and Technical Assistance Project Expanding the Power of the Independent Living Movement Core Services For Independent Living Participant's Manual September 18-19, 2000 St. Louis, Missouri Contributors to the training materials: William Fielding Herb Levine Carri George Raymond Lin Dawn Heinsohn Fern Moskowitz Darrell Lynn Jones Richard Petty Kristy Langbehn 2000 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.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. Core Services For Independent Living Participant's Manual Table of Contents Agenda About the Trainers List of Trainers and IL NET Staff About ILRU About NCIL About IL NET Introduction Learning Objectives ILRC - San Francisco, Service Provision Policies and Procedures Living Independently, ILRC - San Francisco Monthly News Bulletin, July 1997 Planning for Expanded Diversity "When You Go Visiting & Invite the Company Home!" CIL Outreach Manual developed by the SILC of Illinois Independent Living and Rehabilitation Paradigms Community Advocates Training Manual developed by Liberty Resources, Inc. Advocacy: Reality or Rhetoric Inventory reprinted with permission by June Isaacson Kailes Core Services for Independent Living September 18-19, 2000 AGENDA MONDAY, SEPTEMBER 18, 2000 8:30 - 9:00 Continental Breakfast 9:00 - 9:10 Welcome and Orientation 9:10- 9:30 Introductions 9:30 - 10:15 History and Philosophy: A look backward to focus forward 10:15 - 10:30 Break 10:30 - 11:00 Independent Living Philosophy: Reality or Rhetoric Our experiences A skit for reflection 11:00 - 12:00 Core Services for Independent Living Group activity - Definitions and Practices 12:00 - 1:30 Lunch 1:30 - 2:30 Group Feedback 2:30 - 2:45 Break 2:45 - 3:30 Diversity Activity 3:30 - 4:00 What Does Diversity Mean to Us? 4:00 - 5:00 If You Have Achieved Diversity, What Does It Look Like: a Self - Inventory TUESDAY, SEPTEMBER 19, 2000 8:30 - 9:00 Continental Breakfast 9:00 - 9:45 Summing Up Our Experiences Around Diversity 9:45 - 10:15 Peer Services: Breaking Down the Hierarchies 10:15 - 10:30 Break 10:30 - 11:00 Breaking Down the Hierarchies continued 11:00 - 12:00 Independent Living Philosophy: Rhetoric or Reality Inventory 12:00 - 1:30 Lunch 1:30 - 2:30 Discussion of Inventory 2:30 - 2:45 Break 2:45 - 4:00 Information Systems Which Are Meaningful 4:00 - 5:00 Tying It All Together ABOUT THE TRAINERS William Fielding Bill Fielding has been Executive Director of Central Ilinois Center for Independent Living since 1988. During the 10 years prior to that he held various positions within the Illinois Department of Rehabilitation Services. Bill is past Chairman of the Greater Peoria Mass Transit District board, is a member of the Illinois Statewide Independent Living Council, and is also a member of the Illinois Network of Centers for Independent Living. Bill was awarded a Bachelor of Science degree in Human Services from Southern Illinois University - Edwardsville, Illinois. Herb Levine is Program Services Coordinator at the Independent Living Resource Center San Francisco and is chair of the California ILC Olmstead Planning Group. He has worked in independent living for 30 years with a wide range of experience addressing issues including mass care shelter access, accessibility of Jewish community organizations, programmatic access in mental health and substance abuse, welfare to work, Reasonable Accommodation, SSI/SSDI, Personal Assistance Services, Emergency Preparedness, Fair Housing Act, PASS, Self-Advocacy skills "correspondence course", peer counselor training program, consumer speaks conference, "Coming Home" transition from nursing home to community, staff employment and training (10 staff) program and grants administration, and organizational diversity. Fern Moskowitz Fern M. Moskowitz has worked at Liberty Resources, Inc., in Philadelphia, for the past eleven years. She was appointed President/CEO in May 1995, after having held the positions of Vice President/COO and Program Manager of Personal Assistance Services. During her tenure, Liberty Resources has grown to over 70 employees with a budget of $10m +. Liberty Resources established the first Web site of any CIL in the U.S., which is widely recognized for its contribution to the disability field (www.libertyresources.org). Fern sits on the Executive Committees of the Pennsylvania Statewide Independent Living Council (PA SILC) as well as the Pennsylvania Council on Independent Living (PCIL), a statewide organization of Independent Living Centers. Recently, she was successful in achieving systems change in the PA Attendant Care Medicaid Waiver, which now levels the playing field for persons with disabilities to obtain employment. Fern is a proud graduate of the University of Pittsburgh and the State University of New York at Buffalo. LIST OF TRAINERS AND IL NET STAFF Trainers Bill Fielding Executive Director Central Illinois Center for Independent Living 614 West Glen Peoria, Illinois 61614 (309) 682-3500 (V/TTY) (309) 682-3989 (FAX) bfieldin@umtec.com Herb Levine Program Services Coordinator Independent Living Resource Center San Francisco 649 Mission Street, 3rd Floor San Francisco, California 94105 (415) 543-6222 (V) (415) 543-6698 (TTY) (415) 543-6318 (FAX) herb@ilrcsf.org Fern Moskowitz President/CEO Liberty Resources, Inc. 1341 North Delaware, Suite 105 Philadelphia, Pennsylvania 19125 (215) 634-2000 (V) (215) 634-6630 (TTY) (215) 634-6628 (FAX) fernm@ex.libertyresources.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 Raymond Lin Executive Director Project Director hughey@ncil.org rlin@ncil.org Darrell Lynn Jones Kristy Langbehn Training Specialist Project Logistics Coordinator darrell@ncil.org kristy@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 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. Since 1985, it has operated the ILRU Research and Training Center on Independent Living at TIRR, conducting a comprehensive and coordinated set of research, training, and technical assistance projects focusing on leading issues facing the independent living field. 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. CORE SERVICES FOR INDEPENDENT LIVING INTRODUCTION Since early in the Centers for Independent Living movement, most of the key players involved believed there were basic core activities that a CIL must be engaged in to be defined as a CIL. This belief had resulted from the personal experiences of those key players who knew first hand that there were certain building blocks necessary for the process of moving toward independence. Those building blocks weren't negotiable and so the pioneers of the CIL movement and the later two or three generations of players fought long and hard to ensure that those fundamentals, or core services as they came to be known, were a requirement of any federally funded CIL. Since those days of a seeming united vision for core services, a range of interpretations of those core services has evolved among the CILs nationwide. At one end of the spectrum are centers who offer a more traditional case management approach to services. At the other end are centers known mostly for their high advocacy profile. And there are many variations and combinations between the two extremes. The four core services are Information and Referral, Independent Living Skills Training, Advocacy, and Peer Counseling. Over the next two days we're going to explore these four services within the context of the history and philosophy of the independent living movement. Whether you are newly involved in independent living or a seasoned veteran, we encourage you to look at these core services in a new way. Obviously the trainers have their own biases about what these services mean and how to implement them, but the goal here is to get you to examine them in such a way that you may find a fresh, more effective and meaningful way of offering and delivering them in your setting. In the movie, "Dead Poet's Society," Robin Williams is an instructor at a prestigious boy's prep school. His deepest desire is to convey to his students the excitement that can come from being passionate about life and everything that they do, including their studies. On the first day of class he stands up on his desk and asks the stunned boys to tell him why he is standing on his desk. They guess wrong and then he tells them, it is to look at things in a new way. He then invites them one by one to jump up on his desk so they too can see the room in a different way. You won't be asked to get on the furniture in this training, but the metaphor is a powerful one. You are invited to set aside familiar routines so that a fresh perspective might be possible. LEARNING OBJECTIVES Identify critical components of the effective delivery of core services. Effectively integrate the CIL's mission and delivery of core services with independent living philosophy and history. Offer, deliver, monitor, and evaluate core services which support con- sumers in making their own choices and speaking on their own behalf. Identify and describe actions taken in the delivery of core services which give control to consumers (IL model) and those which take away control (medical model). Identify strategies to outreach to communities which are unrepresented and under-represented. Design information systems which give equal value to all services (including those which may be one-time only), promote cross-departmental knowledge and expertise, and capture data which measure not only units of service and time dedicated by staff but also the relevance of services to consumers. An effective organization must share a vision and sense of purpose that all employees can articulate. John Parr The leader is not responsible for the vision, but that there be an ongoing process of visioning throughout the organization. Peter Senge Independent Living Resource Center - San Francisco SERVICE PROVISION POLICIES AND PROCEDURES 1. Assessment and Planning with informed consumer choice There is no one way to conduct an initial meeting. The purpose of this meeting is not just to gather information and complete paperwork. It is a key to establish a relationship, to understand what the consumer wants and how we may best work together. Orientation: Most consumers are accustomed to meeting with service providers and being asked to answer questions about themselves. It can be a sign of respect and a breaking down of standard hierarchies, therefore, to begin by telling the consumer about us:  Who we are: roots in the civil rights movement and advocacy; þ barrier removal is our mission þ board and staff are people with disabilities þ cross disability  How we work: þ peer role model þ provide information, support, advocacy, skills training (in problem solving) þ help consumer understand options and make own choices  Explain what you do and do not do, specifically.  Tell, briefly, of other services.  Offer ILRC brochure and consumer rights pamphlet.  Ask if there are any questions so far. Assessment  Start with what the individual wants. Ask for information that is helpful in elucidating a particular situation, i.e. exact type and amount of income, living situation, nature of disability when there are issues involving disability benefits.  In file notes document the relevant facts you have, so far. Is there more information you need in order to understand the situation, provide infor- mation or begin planning with the consumer?  Summarize with the consumer what information you have. Invite dis- closure of anything else s/he feels is important for you to know. Planning  What is it that this individual wants to achieve? Write this down in her/his own words on the Individual Plan form.  Paraphrase in terms you will note in the Plan section on goals/objectives. Ask if you have understood, correctly.  When this entire process is complete, be sure to note priority numbers if more than one goal and expected date of achievement for each goal. Informed Choice/Active Consumer Role  Informed choice is dependent on full understanding of options. In file notes document (1) what will be involved in achieving goals: information needed, skills to be learned (assertive communication, letter writing, etc.), specific actions to be taken (2) who might be involved: the consumer, you other advocates or service providers at ILRC or elsewhere, etc. (3) how a goal might be achieved: in writing, by telephone, via personal contact, etc.  Discuss options with the consumer. Also, discuss the individual's assessment of her/his own style, skills, strengths, weaknesses, capacity and priorities. Document the choices made by the individual and the basis for that choice. Remember, in an ILC a completely passive role for the consumer with you doing everything is not an option!  Note on the Plan form what you will do and what the consumer will do with timelines.  Be sure to review, periodically, the initial plan and priorities as well as timelines for any necessary amendment. 2. Intake Form: Note intake information as it is provided, naturally. Tell the consumer that you will have questions later; ask first for information helpful to us in providing services. Before asking intake form questions explain what it is used for: Name and address for a newsletter mailing list. This information is confidential and we will not acknowledge that we know this individual without formal permission. Race, age, sexual orientation, disability, etc. This information is separated from names and studied twice a year to ensure that we are serving all parts of our community. When it shows that we are not, then, we do outreach (learning dis- ability, lesbians) or provide new services (Deaf, Latino, Chinese community programs). It is voluntary but important to us. 3. Motor Voter Registration: Explain why this is important. It is voluntary but we must indicate that we have offered it to each person even if s/he declines to sign it (federal requirement). 4. Release of information: Use caution! This form is to be used only when necessary to gather information needed to provide services. It should be accompanied by a note or justification of reasons it was used in the file notes. In completing the release of information form, please take care to note the following: Clearly identify the person with title, address and organization (if any) who is being asked to release information. Fill in your name and title with ILRC address and telephone number as the person who is to receive information. State clearly and briefly (1) what information is to be released (2) in what format, such as written, verbal, etc. and (3) the purpose for which it is to be released. Make sure that you identify only information relevant to the purpose stated. Print or type the name of the person about whom information is to be released, together with other identifiers such as social security number necessary to obtain the information. Ask the consumer if s/he can read and/or understand the content and purpose of this form. Offer to provide the form in another language or with a language interpreter or in an alternate format. Be sure to get the signature of the consumer, date the form and fill in the date beyond which this form is not valid (30-60 days unless your file notes clearly give a reason to go beyond this timeline.) Two witnesses are required if the consumer is unable to write her/his name and enters an "X" or other mark. If the consumer is a minor, signature of a parent or guardian is required. Indicate by crossing out inapplicable designations, whether it is a witness, parent or guardian. 5. Individual Plans: This is an important tool for an ILC. It is a means of showing accountability and of expressing commitment to consumer-directed services. It is a.... NOTE: For additional information on ILRC-SF's policies and procedures, you may call Herb Levine at (415) 543-6222 (V), (415) 543-6698 (TTY). I. NEEDS ASSESSMENT It is the practice of the Independent Living Resource Center to engage actively in community and consumer needs assessment and evaluation of satisfaction with ILRC services. Needs Assessment tools include the following: A. Informal 1. Collation of staff (consumer) experience and perceptions. 2. Unsolicited consumer, community organization input. 3. Input at and from workshop presentations staff does. 4. Collaboration with consumers which is a natural result of peer staff and individual living philosophy. 5. Continuous reading of literature re: disability, including formal needs assessment studies. B. Community Activity with Needs Assessment as By-Product (Sample Only) 1. Advisory Boards: San Francisco State University Rehabilitation Engineering, Mental Health Board. 2. Community Councils: Geriatric Coordinating Council, California Commission Aging Long Term Care Committee, Mayor's Council on Disability Concerns. 3. Collaborative Efforts: CMHS Interagency Planning Group, IHSS Consortium, Environmental Health Network education project. 4. Task Forces: MHA Housing Task Force, TBI Task Force, Social Services Commission ADA Committee C. Formal Needs Assessment 1. Outreach visits to community organizations. 2. Intake follow-up (consumer satisfaction). 3. Newsletter and targeted mailing questionnaires re; services and community needs (twice a year). 4 Evaluations of services by consumers. 5. Focus Groups. 6. Specific solicited input (for example, from Program Committee members.) 7. Time limited Advisory Groups: BUILD, Attendant Referral, Peer Employment Project. 8. In-service presentations to staff. 9. Community organizing activities: San Francisco Network of Mental Health Clients, Traumatic Brain Injury group, Physically Disabled Quorum. 10. Working relationships of staff with peers. INDIVIDUAL PROGRAM QUALITY REVIEW CONSUMER NAME: ________________________________________________ DIRECT SERVICE STAFF:________________________________________________ REVIEWER/TITLE: ____________________________ DATE:______________ 1. Evidence that the consumer is actively involved in planning and making informed choices. Yes No Comments/recommendations: 2. Assessment of consumer need is complete, thorough, timely. Yes No Comments/recommendations: 3. Goals are based on the assessment. Yes No Comments/recommendations: 4. Services are provided for an appropriate length of time, in an appropriate manner/format, with timely follow-up. Yes No Comments/recommendations: 5. Services produce results. Yes No Comments/recommendations: 6. This form is to be used by supervisors, also, as a general quarterly review of direct services staff indicating continuing issues or areas needing improvement or change (leave the space for an individual consumer's name blank). In this space summarize actions taken/training offered and results: ILRC CONSUMER SERVICES FOLLOW-UP NAME:________________________________ TELEPHONE #:______________ New to ILRC Previous Consumer Date(s) and Time(s) called: 1. 2. 3. 1. What is it that you asked us for? 2. Were we able to help you? 3. Are we still working with you? 4. We'd like to know how you felt about staff skill and knowledge and how you were treated. If you were giving it a grade, would you say A, B, C, or D? 5. What suggestions do you have for us about what we offer and how we do that? ILRC EVALUATION SYSTEM WHAT IS MEASURED MEASUREMENT TOOLS HOW, WHEN RESULTS REPORTED I. Community Needs 1. Staff membership on Community Task Forces, Committees, Advisory Boards (Mayor's Council, DR, City College, etc.) 2. Staff attendance at one-time workshops, conferences; reading of newsletters, government and private sector reports, surveys. 3. ILRC consumer and staff demographics. 4. Consumer Input Mechanisms: a. Newsletter survey (general needs or targeted to a particular area such as housing). b. Follow-up with "New" consumers. c. Follow-up, telephone survey of sampling of "old" consumers in each service area (?) d. Focus groups (IHSS, TBI, employ- ment issues, etc.) community forums (candidates forums, transportation system, etc.). *Frequency, content determined by staff with Program Committee input (March). e. Advisory Committee, Task Forces as needed on time limited basis (Fair Housing Program Task Force: Employment Leadership Task Force). Membership includes consumers and other community members. 1. On-going basis to super- visors; in monthly meetings; in special reports at weekly staff meetings; in quarterly narrative reports* (*July-Sept. Report contains staff summaries of community need and recommendations for ILRC actions based on involvement. 2. Same as #1 3. Via staff monthly service reports, intakes. 4. 1. January and/or July via returned newsletter forms. 2. Monthly by independent contractor; results reported on feedback forms with monthly, quarterly, annual tabulation by Program Services Coordinator. 3. Same as 4b. 4. Written reports summariz- ing process and results; done by lead staff after each event (within 15 days). 5. Written reports of process and results after each meeting (within 15 days by lead staff). BY WHOM ANALYZED; WHEN INTEGRATION INTO PLANNING/BUDGETING PROCESS 1. By supervisors; staff feedback; by Program Services Coordinator on-going and in annual report. 2. Same as #1. 3. January and July by PSC via 6 month and annual summary (age groups; race, disability, gender, sexual orientation) for ILRC as a whole and service by service. 4. a. PSC February-March, and/or August-Sept. b. PSC monthly with annual summary of needs revealed. c. Same as 4b. d. PSC and lead staff within one month of event. e. PSC plus lead staff within one month of each meeting. 1. PSC annual report/summary to Administrative staff, Program Committee, with recommendations November. Recommendations to staff, Board, Program Committee December for feedback in January (often through Program Development Day); recommendations finalized in report with implementation timetable to staff, Board, Program Committee Feb. (one year and over three year planning period) results reported to community in April newsletter. 2. Same as #1. 3. Same as #1. 4. a. Same as #1 plus April and/or October report to Program Committee for feedback and recommendation, and in newsletter to community. b. Same as #1 plus quarterly to Program Committee for feedback and recommendations. c. Same as #1 plus quarterly to Program Committee for feedback and recommendations. d. Same as #1 plus report to Program Committee within two months of event for feedback, recommendations plus report in newsletter to community. e. Same as #1 plus with regular reporting to Program Committee for feedback, recommendations. WHAT IS MEASURED MEASUREMENT TOOLS HOW, WHEN RESULTS REPORTED I. Community Needs II. OUTCOMES OF SERVICES PROVIDED f. Program Committee - regular meetings (needs to be revitalized 1/97). 1. Staff direct services reports: 2. Independent Living Plans/Service Files; Workshop/Training Plans. 3. Staff indirect services reports. 4. Quarterly Narrative Reports. 5. Annual Plan: Direct and Indirect Services, including changes. 6. Regular staff supervision. f. At regular meetings; results summarized in written reports by PSC. 1. Written monthly report by each staff person of persons served, services delivered; PSC reports to funders, supervisors, Executive Director, Program Committee, monthly, quarterly, or annually. 2. Each service provider, as services are provided (in each consumer file). 3. Written monthly report by each staff person of services delivered. PSC reports to funders, supervisors, Executive Director, Program Committee, quarterly or annually. 4. Staff annual highlights report to all staff, Board, Program Committee (community education, advocacy, outreach) is 4th quarter report; other reports narrate staff involvements and assessment of community needs and issues. 5. Each service provider as part of 4th quarterly report. 6. Meet at least once per month by supervisor; findings summarized in annual staff evaluation. Regular discussion by supervisor with PSC. BY WHOM ANALYZED; WHEN INTEGRATION INTO PLANNING/BUDGETING PROCESS f. PSC, Program Committee members, Admin. Staff, Board on annual basis. 4a-f Annual summary of all consumer input as part of PSC report. Criteria: 90%-110% of quantitative goals; qualitative issues: services are consumer directed and chosen, appropriate to individual and community needs assessment. 1. PSC monthly; quarterly and annual re: progress in meeting goals; effectiveness of service delivery mechanisms, outreach. 2. Monthly monitoring by supervisors; quarterly summary with service provider training and supervision recommends; PSC annual analysis for implications re: quality of services provided. 3. PSC monthly, quarterly, annual as in II. 1. 4. PSC, supervisors, Executive Director, Board, Program Committee quarterly re: effectiveness of community education, outreach, advocacy. 5. PSC summarizes agency-wide. 6. PSC and supervisors, regularly as appropriate. f. PSC annual report of Program Committee's representativeness of consumer community as in #1. 4a-f Same as #1. 1. By PSC, Executive Director, Development Director, supervisors and line staff at each annual "grant" renewal time re: service delivery goals and effectiveness of service delivery mechanisms; analysis/summary included by PSC in annual report as in I. #1. 2. PSC annual report as in I. #1. 3. As in II. 1. 4. PSC annual report summarizes ILRC community education, outreach and advocacy as well as effectiveness of ILRC efforts as in I. #1. 5. Part of Program Development Day process (January - as in I #1). 6. Reflected in PSC summaries of effectiveness of services in annual report as in I #1. WHAT IS MEASURED MEASUREMENT TOOLS HOW, WHEN RESULTS REPORTED III. CONSUMER SATISFACTION IV. EFFECTIVENESS OF EVALUATION SYSTEM 1. Monthly follow-up (See I 4b, c) 2. Annual "how are we doing" newsletter survey. 3. Workshop Series - Training evaluation. 1. Annual meeting of PSC, 1 supervisor, 1 Program Committee member (March). 1. See I 4b, c. 2. January or July. 3. Written or verbal; after each session and/or at conclusion of training. 1. Written summary by PSC: April. BY WHOM ANALYZED; WHEN INTEGRATION INTO PLANNING/BUDGETING PROCESS 1. PSC monthly with annual summary of trends. 2. PSC in February-March or August-September. 3. PSC and lead staff at conclusion of training. 1. By planning group 1. When trends are revealed, remedial action is immediate with supervisors and line staff; summary in annual report. 2. Same as I #1 and 4a. 3. Recommendations for change and monitoring timetable within 1-2 months of conclusion of training. 1. Recommendations for change in report to staff, Executive Director, Board, Program Committee (May) to be finalized shortly after feedback (June-July). Living Independently MONTHLY NEWS BULLETIN JULY 1997 HOW ARE WE DOING? Help ILRC evaluate its services and their importance to you. The most important ILRC Services for me are: In meeting my needs I rate these services: (check one or more) (circle one number: 4 is best rating). Individual Advocacy 1 2 3 4 Systems Change Advocacy 1 2 3 4 Attendant Referral 1 2 3 4 Chinese Community Service 1 2 3 4 Deaf Services 1 2 3 4 Disability Benefits Counseling 1 2 3 4 Employment Workshops 1 2 3 4 Housing 1 2 3 4 Information About Community Resources 1 2 3 4 Latino Community Services 1 2 3 4 Peer Counseling 1 2 3 4 Peer Counseling Training 1 2 3 4 Other: 1 2 3 4 I think ILRC should be doing more: My suggestions are: (check one or more). Advocacy about: Community Education About/Directed At: Services: Other comments/changes I would like to see at ILRC: Return this completed survey to ILRC by August 29, 1997 and enter yourself in a drawing for $25 in gift certificates to Macy's and a $10 Mel's Diner gift certificate. Name Address Telephone Number I am a: ____Person with a Disability ____Staff at Community Organization ____Family/Friend of Person with a Disability ____Other CREATING ILRC'S AGENDA FOR CHANGE 1. In my opinion the most important issues facing people with disabilities in San Francisco are: (Check one or more and explain.) Accessibility of buildings, services, programs: Assistive technology: Education and training: Employment: Health Care: Housing: In-Home Support Services: Transportation: Other: 2. In my opinion, what is needed is: 3. I would like to participate in ILRC's Agenda for change by: (Check as many as apply). Sharing my experience with others who are dealing with these issues. Going to meetings to discuss advocacy efforts. Learning how to be a more effective advocate. Helping with phone calls and/or letters about important issues (to legislators, government officials, etc.) Talking to groups and/or news media about my experience and specific issues. Testifying at public hearings. Other: Return this completed survey to ILRC by_______________and enter yourself in a drawing for $________in gift certificates to ________________________________. Name:________________________________________________________________ Address:_____________________________________________________________ Person with a Disability Staff at Community Organization Family/Friend of a Person with a Disability Other 1998 ILRC PROGRAM COMMITTEE CALENDAR January 28, 1998: ILRC brochure - Simplifying Perceptions of community needs Additional members February 25, 1998: Annual Evaluation Report Staff ideas for 1998 Program Development Day March 25, 1998 Effectiveness of evaluation system Consumer involvement in ILRC April 22, 1998: Review of newsletter survey results ILRC's Advocacy agenda Selection of programs to review (4) May 27, 1998: Program review Review January to March staff quarterly report June 24, 1998: Program review July 22, 1998: Program review August 1998: No meeting September 23, 1998: Review April to June staff quarterly report Program review October 28, 1998: July newsletter survey results Consumer and staff demographics November 25, 1998: Staff and committee perceptions of community needs Committee perceptions of overall ILRC programming, community education, advocacy, staffing, volunteer needs. December, 1998 No meeting Planning for Expanded Diversity A. Preliminary Questions 1. What is your center's vision of diversity? when asking Board? when asking staff? when asking Consumers? 2. Describe the current diversity of your center in terms of age, gender, ethnicity, sexual identity, and disability. Board: Staff: Consumers: 3. Describe your community's demographics. Age: Gender: Ethnicity: Sexual identity: Disability: 4. Who is not included or is under-represented at your center? Board: Staff: Consumers: 5. What are the reasons for under-representation? What are the barriers to inclusion? when asking Board? when asking Staff? when asking consumers (both included and under-represented)? 6. What are your center's priorities for inclusion? when asking Board? when asking Staff? when asking Consumers? B. Planning Process 7. With whom do you propose to begin building a relationship? How do you plan to do that? Who will you seek out as community consultants? 8. How do you imagine building your visibility in and for the specific community(ies). 9. What is needed to be inclusive in current programs? How do you plan to include what is needed? 10. What new, targeted programs are needed? How do you plan to add them? 11. What organizational changes are needed: attitudes, physical environment, staffing, board, language capacity, etc.? How do you plan to achieve them? 12. FIRST STEPS: who will take the lead? What will be accomplished by when? #1: #2: #3: Independent Living Resource Center San Francisco 649 Mission Street, San Francisco, CA 94105 The Statewide Independent Living Council of Illinois "When You Go Visiting & Invite the Company Home!" Center for Independent Living: Outreach Manual Table of Contents: [Note: the page numbers listed here are from the original document and do not reflect the page numbering for this manual.] Acknowledgments & Funding:...........................................................................Page-2- Preface:.............................................................................................................Page-3- Purpose:............................................................................................................Page-6- Who Should Use This Manual?:........................................................................Page-6- Terms Used In This Manual:..............................................................................Page-7- The Independent Living and Civil Rights Movements........................................Page-9- Five (5) Elements of Effective Outreach.............................................................Page-19- I. Identifying the Unserved and Underserved:.......................................Page-20- II. Understanding Cultures and Needs:...................................................Page-24- III. Marketing and Public Relations:..........................................................Page-27- IV. Staff and Board Outreach Planning:...................................................Page-31- V. Eliminating Service Barriers:...............................................................Page-32- Implementation and Evaluation:..........................................................................Page-34- References:.........................................................................................................Page-37- Acknowledgments: The Statewide Independent Living Council of Illinois would like to acknowledge the following individuals who were involved in the development of this manual: Matt Abrahamson, Concie Aramburu, Anthony Arellano, Lori Clark, Tara Dunning, John M. Eckert, Mike Egbert, William Fielding, Linda Foley, Ann Ford, Edwin Gonzalez, Cecilia Haasas, Catherine Holland, Sue Johnson-Smith, Gail Kear, Elizabeth Miller, Violet Nast, Kyle Packer, Gary Paruszkiewicz, Burton D. Pusch, Juliana Recio, Sue Riddle, Fran Sager, Elizabeth Sherwin, Shirley Thomas, Randy Wells, Sharon White, Ken Williams, Paul Zaragoza. Special thanks go to the following individuals who have seen this project through to the end, and were the initial trainers in 1998: Ken Williams, Elizabeth Sherwin,Catherine Holland, William Fielding, Lori Clark. Funding: Funding for this manual and for the initial Illinois training were allocated through the Rehabilitation Services Administration: Title VII-B (Illinois Department of Human Services; Office of Rehabilitation Services [Statewide Independent Living Council of Illinois; Capacity Development Grant #98-54-11-001R]). The Statewide Independent Living Council of Illinois 122 South Fourth Street Springfield, Illinois 62701 V/TTY: 217/744-7777 E-Mail: SILC@FGI.NET FAX: 217/744-7744 Preface: Statewide Independent Living Council of Illinois Study: The 1995 Illinois Independent Living Services Capacity/Needs Assessment commissioned by the Statewide Independent Living Council of Illinois (SILC) indicated that Illinois Centers for Independent Living (CILs) are often under-funded and over- whelmed with community demands on their resources and time. In addition, CILs reported only nominal success using formally structured outreach plans. Most CILs rely on their networks with local organizations and their work with local consumers to keep them up-to-date on the needs of their communities. Many CILs indicated they would like information on how to maximize the effectiveness of their outreach efforts to unserved and underserved populations in their service delivery area. The need to increase outreach was identified by the 1995 SILC study and was included as part of the Illinois State Plan for Independent Living Services and Centers for Independent Living: 1996-1998 (SPIL). Members of SILC voted to develop an Outreach Planning Manual that would help Illinois CILs increase the effectiveness of their outreach activities. This manual will provide CILs with the basic information necessary in developing, implementing, and evaluating outreach efforts. 1992 Amendments to the Rehabilitation Act: A Rehabilitation Act finding supports the need to promote outreach. In Section 21 of the 1992 Amendments to the Rehabilitation Act of 1973, Congress found that: Changing Racial Profile: ''The racial profile of America is rapidly changing. While the rate of increase for white Americans is 3.2 percent, the rate of increase for racial and ethnic minorities is much higher: 38.6 percent for Latinos, 14.6 percent for African-Americans, and 40.1 percent for Asian Americans and other ethnic groups. By the year 2000, the Nation will have 260,000,000 people, one of every three of whom will be either African-American, Asian-American or Latino.'' Rate of Disability: "Ethnic and racial minorities tend to have disabling conditions at a disproportionately higher rate. The work-related disability for American Indians is about one and one half times that of the general population. African-Americans are also one and one half times more likely to be disabled than whites and twice as likely to be severely disabled." Inequitable Treatment: ''Patterns of inequitable treatment of minorities have been documented in all major junctures of the vocational rehabilitation process. As compared to white Americans, a larger percentage of African-American applicants to the vocational rehabilitation system are denied acceptance. Of applicants accepted for service, a larger percentage of African-American cases are closed without being rehabilitated. Minorities are provided less training than their white counter parts. Consistently, less money is spent on minorities than their white counter parts.' Title VII- CIL Requirement: "In awarding grants, contracts, or cooperative agreements under titles I, II, III, VI, VII, and VIII, and section 509, the [Rehabilitation Services Administration] Commissioner and the Director of the National Institute on Disability and Research, where appropriate, shall require applicants to demonstrate how they will address, in whole or in part, the needs of individuals from minority backgrounds." SILC Outreach Committee: In the summer of 1996, the SILC Outreach Committee put together an ad-hoc work group composed of staff from Illinois CILs and statewide minority organizations to develop an Outreach Planning Manual. During 1996 and 1997, the work group met on numerous occasions, and via conference calls, to develop a comprehensive document that will help CILs implement outreach activities to reach unserved and underserved populations in their service area. In 1998, a handful of original participants developed regional CIL training and made final changes to this manual. Purpose: The purpose of this manual is to give Center for Independent Living (CIL) staff and boards ideas on how they might develop, implement and evaluate effective outreach efforts. It has been designed to be flexible in order to meet the unique needs of each CIL and the many neighborhoods and communities in their service area. It is the intention of the SILC Outreach Committee to provide a manual that covers a comprehensive range in which each CIL will find information that is helpful to improving their local outreach efforts. The manual will help CILs tailor their outreach activities to met the needs of their community. Who Should Use This Manual?: This manual is intended to provide useful information for staff members as well as board members by providing ideas and examples of how CILs can enhance their ability to reach unserved and underserved populations. With increasing state and federal emphasis on outcomes, this document will assist CILs in developing an outreach plan that can be applied. This manual will help to increase the likelihood that CIL board composition and consumer service demographics will reflect their service area. This manual is meant to be a tool to help CILs work smarter, not harder. Terms Used In This Manual: 1. Traditionally Unserved and Underserved Populations: In your service area this might include one or more of the following: Age: Both seniors and children. Gender: Males and females tend to be equally unrepresented. Racial and Ethnic: African Americans, Asian Americans, Latinos, and Native Americans. Disability: Persons with hearing, visual, cognitive, developmental, psychological disabilities, and multiple chemical sensitivities. Institutions: Persons who live in developmental disability institutions, nursing facilities, group homes, retirement communities, rehabilitation units, hospice and other congregate settings. Socio-economic status: Persons living in economically depressed areas. Geography: Most of Illinois is rural. Many rural areas do not have a Center for Independent Living. In addition, statistics indicate that 74 percent of the individuals currently receiving direct services by an existing CIL, are people who live in the county where their CIL is located. Other groups: Some unserved and underserved groups may have a higher than average representation in a service area. For example, persons in rehabilitation facilities, workshops, and persons in retirement communities. The demographic and geographic profile of each Center for Independent Living will be unique. The potential population of persons who could benefit from CIL services and activities can be complex because individuals and their families may fall into one or more of the demographic and geographic categories cited above. 2. Ethnic Groups: Of or relating to large groups of people classed according to common racial, national, tribal, religious, linguistic, cultural origin or background. 3. Bicultural: Someone who is of two cultures, as well as, may have the ability to read and/or speak two languages. 4. Latino: Anyone whose ancestry derives from a Latin country (e.g., Mexico, Puerto Rico, Columbia, Brazil). 5. National Disability Organizations: Independent Living Research Utilization Project (ILRU). National Council on Independent Living (NCIL). National Council on Disability (NCD). National Center for Latinos with Disabilities (NCLD). The History of Independent Living [and Civil Rights Movements]: by Gina McDonald and Mike Oxford (reprinted with permission) This account of the history of independent living stems from a philosophy which states that people with disabilities should have the same civil rights, options, and control over choices in their own lives as do people without disabilities. The history of independent living is closely tied to the civil rights struggles of the 1950s and 1960s among African Americans. Basic issues-- disgraceful treatment based on bigotry and erroneous stereotypes in housing, education, transportation, and employment-- and the strategies and tactics are very similar. This history and its driving philosophy also have much in common with other political and social movements of the country in the late 1960s and early 1970s. There were at least five movements that influenced the disability rights movement. Social Movements The first social movement was deinstitutionalization, an attempt to move people, primarily those with developmental disabilities, out of institutions and back into their home communities. This movement was led by providers and parents of people with developmental disabilities and was based on the principle of ''normalization'' developed by Wolf Wolfensberger, a sociologist from Canada. His theory was that people with developmental disabilities should live in the most ''normal'' setting as possible if they were to expected to behave ''normally.'' Other changes occurred in nursing homes where young people with many types of disabilities were warehoused for lack of ''better'' alternatives (Wolfensberger, 1972). The next movement to influence disability rights was the civil rights movement. Although people with disabilities were not included as a protected class under the Civil Rights Act, it was a reality that people could achieve rights, at least in law, as a class. Watching the courage of Rosa Parks as she defiantly rode in the front of a public bus, people with disabilities realized the more immediate challenge of even getting on the bus. The ''self-help'' movement, which really began in the 1950s with the founding of Alcoholics Anonymous, came into its own in the 1970s. Many self-help books were published and support groups flourished. Self-help and peer support are recognized as key points in independent living philosophy. According to this tenet, people with similar disabilities are believed to be more likely to assist and to understand each other than individuals who do not share experience with similar disability. Demedicalization was a movement that began to look at more holistic approaches to health care. There was a move toward ''demystification'' of the medical community. Thus, another cornerstone of independent living philosophy became the shift away from the authoritarian medical model to a paradigm of individual empowerment and responsibility for defining and meeting one's own needs. Consumerism, the last movement to be described here, was one in which consumers began to question product reliability and price. Ralph Nader was the most outspoken advocate for this movement, and his staff and followers came to be known as ''Nader's Raiders.'' Perhaps most fundamental to independent living philosophy today is the idea of control by consumers of goods and services over the choices and options available to them. The independent living paradigm, developed by Gerben DeJong in the late 1970s (DeJong,1979), proposed a shift from the medical model to the independent living model. As with the movements described above, this theory located problems or ''deficiencies'' in the society, not the individual. People with disabilities no longer saw themselves as broken or sick, certainly not in need of repair. Issues such as social and attitudinal barriers were the real problems facing, people with disabilities. The answers were to be found in changing and ''fixing'' society, not people with disabilities. Most important, decisions must be made by the individual, not by the medical or rehabi- litation professional. Using these principles, people began to view themselves as powerful and self-directed as opposed to passive victims, objects of charity, cripples, or not-whole. Disability began to be seen as a natural, not uncommon, experience in life, not a tragedy. Independent Living Ed Roberts is considered to be the ''father of independent living.'' Ed became disabled at the age of fourteen as a result of polio. After a period of denial in which he almost starved himself to death, Ed returned to school and received his high school diploma. He then wanted to go to college. The California Department of Rehabilitation initially rejected Ed's application for financial assistance because it was decided that he was ''too disabled to work.'' He went public with his fight and within one week of doing so, was approved for financial aid by the state. Fifteen years after Ed's initial rejection by the State of California as an individual who was ''too disabled,'' he became head of the California Department of Rehabilitation-- the agency that had once written him off. After Ed earned his associate's degree at the College of San Mateo, he applied for admission to the University of California at Berkeley. After initial resistance on the part of the university, Ed was accepted. The university let him use the campus hospital as his dormitory because there was no accessible student housing (none of the residential buildings could support the weight of Ed's 800-lb. iron lung). He received attendant services through a state program called ''Aid to the Totally Disabled.'' This is a very important note because this was a consumer-controlled, personal assistance service. The attendants were hired, trained, and fired by Ed. In 1970, Ed and other students with disabilities founded a disabled students' program on the Berkeley campus. His group was called the ''Rolling Quads.'' Upon graduation, the ''Quads'' set their sights on the need for access beyond the university's walls. Ed contacted Judy Heumann, another disability activist, in New York. He encouraged her to come to California and along, with other advocates, they started the first Center for Independent Living in Berkeley. Although it started out as a ''modest'' apartment, it became the model for every such Center in the country today. This new program rejected the medical model and focused on consumerism, peer support, advocacy for change, and independent living skills training. In 1983, Ed, Judy, and Joan Leon, co-founded the World Institute on Disability (WID), an advocacy and research center promoting the rights of people with disabilities around the world. Ed Roberts died unexpectedly on March 14, 1995. The early 1970s was a time of awakening for the disability rights movement in a related, but different way. As Ed Roberts and others were fighting for the rights of people with disabilities presumed to be forever ''homebound'' and were working to assure that participation in society, in school, in work, and at play was a realistic, proper, and achievable goal, others were coming to see how destructive and wrong the systematic institutionalization of people with disabilities could be. Inhuman and degrading treatment of people in state hospitals, schools and other residential institutions such as nursing facilities were coming to light and the financial and social costs were beginning to be considered unacceptable. This awakening within the independent living movement was exemplified by another leading disability rights activist, Wade Blank. ADAPT Wade Blank began his lifelong struggle in civil rights activism with Dr. Martin Luther King, Jr. in Selma, Alabama. It was during this period that he learned about the stark oppression which occurred against people considered to be outside the ''mainstream'' of our ''civilized'' society. By 1971, Wade was working in a nursing facility, Heritage House, trying to improve the quality of life of some of the younger residents. These efforts, including taking some of the residents to a Grateful Dead concert, ultimately failed. Institutional services and living arrangements were at odds with the pursuit of personal liberties and life with dignity. In 1974, Wade founded the Atlantis Community, a model for community-based, consumer-controlled, independent living. The Atlantis Community provided personal assistance services primarily under the control of the consumer within a community setting. The first consumers of the Atlantis Community were some of the young residents ''freed'' from Heritage House by Wade (after he had been fired). Initially, Wade provided personal assistance services to nine people by himself for no pay so that these individuals could integrate into society and live lives of liberty and dignity. In 1978, Wade and Atlantis realized that access to public transportation was a necessity if people with disabilities were to live independently in the community. This was the year that Americans Disabled for Accessible Public Transit (ADAPT) was founded. On July 5-6, 1978, Wade and nineteen disabled activists held a public transit bus ''hostage'' on the corner of Broadway and Colfax in Denver, Colorado. ADAPT eventually mushroomed into the nation's first grassroots, disability rights, activist organization. In the spring of 1990, the Secretary of Transportation, Sam Skinner, finally issued regulations mandating lifts on buses. These regulations implemented a law passed in 1970-- the Urban Mass Transit Act-- which required lifts on new buses. The transit industry had successfully blocked implementation of this part of the law for twenty years, until ADAPT changed their minds and the minds of the nation. In 1990, after passage of the Americans with Disabilities Act (ADA), ADAPT shifted its vision toward a national system of community-based personal assistance services and the end of the apartheid-type system of segregating people with disabilities by imprisoning them in institutions against their will. The acronym ADAPT became ''Americans Disabled for Attendant Programs Today.'' The fight for a national policy of attendant services and the end of institutionalization continues to this day. Wade Blank died on February 15, 1993, while unsuccessfully attempting to rescue his son from drowning in the ocean. Wade and Ed Roberts live on in many hearts and in the continuing struggle for the rights of people with disabilities. These lives of these two leaders in the disability rights movement, Ed Roberts and Wade Blank, provide poignant examples of the modern history, philosophy, and evolution of independent living in the United States. To complete this rough sketch of the history of independent living, a look must be taken at the various pieces of legislation concerning the rights of people with disabilities, with a particular emphasis on the original ''bible'' of civil rights for people with disabilities, the Rehabilitation Act of 1973. Civil Rights Laws Before turning to the Rehabilitation Act, a chronological listing and brief description of important federal civil rights laws affecting people with disabilities is in order. 1964-- Civil Rights Act: prohibits discrimination on the basis of race, religion, ethnicity, national origin, and creed; later, gender was added as a protected class. 1968-- Architectural Barriers Act: prohibits architectural barriers in all federally owned or leased buildings. 1970-- Urban Mass Transit Act: requires that all new mass transit vehicles be equipped with wheelchair lifts. As mentioned earlier, it was twenty years, primarily because of machinations of the American Public Transit Association (APTA), before the part of the law requiring wheelchair lifts was implemented. 1973-- Rehabilitation Act: particularly Title V, Sections 501, 503, and 504, prohibits discrimination in federal programs and services and all other programs or services receiving federal funding. 1975-- Developmental Disabilities Bill of Rights Act: among other things, establishes Protection and Advocacy services (P & A). 1975-- Education of All Handicapped Children Act (PL 94-142): requires free, appropriate public education in the least restrictive environment possible for children with disabilities. This law is now called the Individuals with Disabilities Education Act (IDEA). 1978-- Amendments to the Rehabilitation Act: provides for consumer-controlled Centers for Independent Living. 1983-- Amendments to the Rehabilitation Act: provides for the Client Assistance Program (CAP), an advocacy program for consumers of rehabilitation and independent living services. 1985-- Mental Illness Bill of Rights Act: requires protection and advocacy services (P & A) for people with mental illness [psychological disabilities]. 1988-- Civil Rights Restoration Act: counteracts bad case law by clarifying Congress' original intention that under the Rehabilitation Act, that discrimination in ANY program or service that is a part of an entity receiving federal funding-- not just the part which actually and directly receives the funding-- is illegal. 1988-- Air Carrier Access Act: prohibits discrimination on the basis of disability in air travel and provides for equal access to air transportation services. 1988-- Fair Housing Amendments Act: prohibits discrimination in housing against people with disabilities and families with children. Also provides for architectural accessibility of certain new housing units, renovation of existing units, and accessibility modifications at the renter's expense. 1990-- Americans with Disabilities Act: provides comprehensive civil rights protection for people with disabilities; closely modeled after the Civil Rights Act and Section 504 of Title V of the Rehabilitation Act and its regulations. The modem history of civil rights for people with disabilities is three decades old. A key piece of this decades-long process is the story of how the Rehabilitation Act of 1973 was finally passed and then implemented. It is the story of the first organized disability rights protest. The Rehabilitation Act of 1973 In 1972, Congress passed a rehabilitation bill that independent living activists cheered. President Richard Nixon's veto prevented this bill from becoming law. During the era of political activity at the end of the Vietnam War, Nixon's veto was not taken lying down by disability activists who launched fierce protests across the country. In New York City, early leader for disability rights, Judy Heumann, staged a sit-in on Madison Avenue with eighty other activists. Traffic was stopped. After a flood of angry letters and protests, in September 1973, Congress overrode Nixon's veto and the Rehabilitation Act of 1973 finally became law. Passage of this pivotal law was the beginning of the ongoing fight for implementation and revision of the law according to the vision of independent living advocates and disability rights activists. Key language in the Rehabilitation Act, found in Section 504 of Title V, states that: No otherwise qualified handicapped individual in the United States shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance. Advocates realized that this new law would need regulations in order to be implemented and enforced. By 1977, Presidents Nixon and Ford had come and gone. Jimmy Carter had become president and had appointed Joseph Califano his Secretary of Health, Education and Welfare (HEW). Califano refused to issue regulations and was given an ultimatum and deadline of April 4, 1977. April 4 went by with no regulations and no word from Califano. On April 5, demonstrations by people with disabilities took place in ten cities across the country. By the end of the day, demonstrations in nine cities were over. In one city-- San Francisco-- protesters refused to disband. Demonstrators, more than 150 people with disabilities, had taken over the federal office building and refused to leave. They stayed until May 1. Califano had issued regulations by April 8, but the protesters stayed until they had reviewed the regulations and approved of them. The lesson is a fairly simple one. As Martin Luther King said: It is an historical fact that the privileged groups seldom up their privileges voluntarily. Individuals may see the moral light and voluntarily give up their unjust posture, but, as we are reminded, groups tend to go more immoral than individuals. We know, through painful experiences that freedom is never voluntarily given by the oppressor, it must be demanded by the oppressed. Leaders in the Independent Living Movement The history of the independent living movement is not complete without mention of some other leaders who continue to make substantial contributions to the movement and to the rights and empowerment of people with disabilities. Max Starkloff, Charlie Carr, and Marca Bristo founded the National Council on Independent Living (NCIL) in 1988. NCIL is one of the only national organizations that is consumer-controlled and promotes the rights and empowerment of people with disabilities. Justin Dart played a prominent role in the fight for passage of the Americans with Disabilities Act, and is seen by many as the spiritual leader of the movement today. Lex Frieden is co-founder of ILRU Program. As director of the National Council on Disability, he directed preparation of the original ADA legislation and its introduction in Congress. Liz Savage and Pat Wright are considered to be the ''mothers of the ADA.'' They led the consumer fight for the passage of the ADA. REFERENCES DeJong, Gerben. ''Independent Living: From Social Movement to Analytic Paradigm,'' Archives of Physical Management and Rehabilitation: 60, October, 1979. Wolfensberger, Wolf. The Principle of Normalization in Human Services. Toronto: National Institute on Mental Retardation, 1972. Five (5) Elements of Effective Outreach: I. Identifying the Unserved and Underserved: II. Understanding Cultures and Needs: III. Marketing and Public Relations: IV. Staff and Board Outreach Planning: V. Eliminating Service Barriers: I. Identifying the Unserved and Underserved Identifying the demographics in your service area is the first priority. All of your planning for outreach activities will depend on the racial, ethnic, disability, age, gender, socio- economic status, and geography profile of your service area. 1. What is the Demographic and Geographic Profile of the Targeted Group in Respect to?: a) Age. b) Gender. c) Racial and Ethnic background. d) Disability: physical, hearing, visual, cognitive, developmental disabilities, multiple chemical sensitivities, and others. e) Residential status: large/small institutions, nursing homes, hospice, with family/friends, independent (with/without support services). f) Socio-economic status. g) Proximity to population centers. h) Other groups with a higher than average representation in a service area, (e.g., persons in rehabilitation facilities, workshops, retirement communities, and the like. 2. Community Resources and Needs Assessment: a) A needs assessment should be conducted. Following is a list of possible issues that might be explored: i) Affordable and Accessible Housing. ii) Affordable and Accessible Transportation. iii) Mainstreamed Employment Opportunities. iv) Mainstreamed Educational Opportunities. v) Natural Community Supports (for example): Personal Assistant Services. ASL Interpreters. TTY Access in public agencies. TTY Access in businesses. Alternate format (Braille, tape, disk, etc.) in public agencies. Alternate format (Braille, tape, disk, etc.) in businesses. Respite Services. vi) Affordable and Accessible Retail Stores. vii) Affordable and Accessible Recreation. viii) Accessible public services and facilities. b) What organizations, programs, and services are already available? i) Do these organizations and services promote the independent living philosophy? ii) Are people satisfied? Why/why not? iii) What are the key issues that persons with disabilities would like to address? c) Based on the demographic profile, who is not being served? i) Why? ii) What are the barriers (environmental, geographic, attitudinal, skills, knowledge) that must be addressed? iii) What local organizations might support CIL activities? What local organization might resist CIL activities? 3. Potential Sources for Finding Information (may include): a) Bureau of the Census. b) Bureau of Vital Statistics. c) Chamber of Commerce. d) City and County Planning Departments. e) Community Action Centers. f) Local College and University libraries. g) United Way. h) Public Housing Authorities. i) Urban Leagues. j) NAACP. k) Others 4. How to Get Information: Many organizations who focus on issues related to persons with disabilities, as well as organizations who do not focus specifically on disability issues may have data that can assist your Center for Independent Living. They include local, State and National sources. a) Basic local research: i) Utilize telephone and service directories. ii) Libraries. iii) Community Colleges and Universities. iv) City and County Planning Departments. v) Local ethnic organizations. vi) Local service organizations. b) State sources (may include): i) State library. ii) Department of Human Services, Rehabilitation Services. iii) Statewide Independent Living Council. iv) Coalition of Citizens with Disabilities in Illinois. v) Illinois Assistive Technology Project. vi) Other disability and advocacy councils and organizations. c) National sources: There are some national sources who collect and keep demographic information, including: i) Independent Living Research Unit. ii) National Council on Independent Living. iii) National Council on Disability. NOTE: For reasons of accuracy, definitions of disability must be clear and specific. Don't assume that your definition of "disability," "deaf," or "blind" is identical to the definition used in a study. For example, if a local United Way study finds that 14 percent of the community's population is African-American, and a local Chamber of Commerce study finds that 18 percent of African-Americans are unemployed, don't apply the unemployment percentages to the population percentages (this is like mixing apples and oranges). Unless the data are from exactly the same sample, you can't assume there is any connection between the two different samples of the population. Citing the population and unemployment percentages from both the United Way and the Chamber of Commerce can support the need for a CIL and is perfectly reasonable as long as you do not assume a connection between the two percentages. II. Understanding Cultures and Needs 1. Know and Respect Cultural Differences Gathering statistical information is only the first step to outreach. Taking time to know and respect cultural differences gives life to the information gathered during your research. Not all cultures understand or accept the Independent Living philosophy as it is perceived by Centers for Independent Living (CILs). Therefore, one can not assume the target group needs, wants, or can access the CIL's current services. The most important goal is to collect information from unserved and underserved groups in a way that is open to understanding and respecting the cultural context of their needs. We must learn: What are the needs? How do we demonstrate community support for those needs? How can CILs adjust their programs to meet those needs? These questions are important because they demonstrate that the CIL is not just selling its own activities and services, but has a genuine interest in the needs of that community or cultural group. The planning process must respect and incorporate the cultural language, traditions, beliefs and spiritual perspective of the target population. An understanding that the social and economic climate of the population is important, because ''disability'' may not be a primary concern. You cannot stereotype cultures. You must have a knowledge of the community and their issues and priorities. It is important to know the leaders and key players to help provide effective outreach. 2. Know Your Communities: a) Identify individuals in your neighborhoods or communities who are bilingual and bicultural to work with your CIL and help you through this process. b) Use a reliable method to gather information to access that population, such as: i) Conduct focus groups. ii) Conduct interviews. iii) Conduct mail or telephone surveys. iv) Assess CIL information and referral data. c) Develop a list of issues or information you need to know in order to serve your target population. d) Conduct relevant outreach training for all staff and board utilizing representatives of unserved and underserved populations. 3. Build Partnerships: 1. Invest in the community by having CIL representatives participate in activities that are relevant to the targeted population, not just those that concern Independent Living. b) Work with effective community based organizations that provide services to unserved and under-served populations to: i) Understand their programs and services. ii) Find ways to have CIL services compliment their services. c) There should be representation on the CIL board and staff of qualified individuals from unserved or under-served populations and communities. d) Recommend potential leaders with disability to serve on other organization's boards and committees. III. Marketing and Public Relations Utilize the needs and issues identified of the targeted population and incorporate these issues into the Center for Independent Living's (CILs) Strategic Plan. Based on the feedback, develop a public relations campaign using the information and suggestions gathered. Create outreach materials which target the needs of a specific population segment. þ Create materials which identify common issues that cut across all potential CIL consumers. þ Communication is developed in a way that is accessible to the target group. All information (letters, brochures, applications, etc.) should: Be written at a reading level that is easy to understand. Avoid acronyms and ''professional phrases'' that are not easily understood by the intended audience (i.e., what does ILS or 'independent living skills' mean?). Be written in a language that can be understood (i.e., everyday Spanish, not necessarily the courses they taught in school). Be accessible in a variety of formats; Braille, large print, tape and disk. Be provided in Spanish and English when targeting the Latino community. Identify qualified persons who can edit and proof materials in Spanish, Chinese, or other languages. þ Monitor the effectiveness of your public relations campaign by reviewing your service demographics and by talking to representatives of your target population. If you provide information in another language, ensure staff is readily available to communicate effectively. There should also be a process in place to address language issues. 1. Working with the General Public: Develop and implement a strategy to get information to the general public in a CIL service area that is accurate and cost-effective. A. Public Relations Strategy: Create a media package which clearly identifies the CIL's mission, services and programs. You should also develop a plan. The media package should clearly understand and articulate the mission, services, and activities of your CIL. The plan should include: i) Training for board and staff to interact with media . ii) Designate a lead person to provide public information. iii) Develop and maintain personnel relationships with local media people (reporters, staff, public and private individuals who may have access to the media). iv) Make sure that the CIL reacts to issues that affect people with disabilities. Keep copies of press releases, newspaper articles, televisions and radio spots. These will help build a community history of your organization and gives you feedback on better ways to get the word out. b. Enhancing Your Public Relation Strategies: i) Respond to issues which are hot or controversial in the local media. Include issues which affect unserved and underserved populations before you attempt to address the independent living issues. This will allow you a greater opportunity to gain your targeted communities trust. ii) Look for opportunities to utilize existing mailings, (i.e.: banks, utility companies, Chamber of Commerce and other organizations). iii) Look for creative ways to develop partnerships in your advertising, (e.g., get a local College or University to donate time, materials and students to develop a local commercial or Public Service Announcement (PSA) for your CIL. iv) Create opportunities through radio, TV, and newspapers on a regular basis. For example: 1) Regular disability information segments (on a local television magazine show or local radio program). 2) A regular disability program on public television. 3) A regular column in a local newspaper or newsletter. 4) CILs could also use their own monthly calendars and newsletters to share information. 5) Take advantage of state and federal laws requiring media organizations to give free time and PSAs to local not-for-profit organizations. Be sure to talk about (and perhaps negotiate) when the PSA will be aired. 6) Establish a link with an organization to produce a disability issues program on public television or radio. v) Conduct research to locate good, generic videos (short commercials or 30 minute cable programs) on what a Center for Independent Living does. Review and select a video for possible distribution to local television and cable stations. vi) Research the possibility of having a foundation underwrite the cost of purchasing or producing a generic video for Illinois CILs (something CILs could get aired locally, that would identify their center by name, address and phone number). IV. Staff and Board Outreach Planning The Center for Independent Living (CIL) should operate in a manner which is sensitive to and respectful of ethnic and disability culture. 1. Actively recruit qualified staff and board who represent ethnic and disability demographics, as well as promote the independent living philosophy. Recruit qualified staff and board by creating and maintaining linkages in target populations for present and future staff needs. 2. Annually conduct activities that enhance cross cultural sensitivity. Develop cross training with other organizations and agencies. a) Organize a committee to develop a training model and schedule that would enable you to send out proposals to consultants. b) Request that staff, board, consumers and agency contacts assist in identifying consultants and trainers. c) Designate resources to conduct training. V. Eliminating Service Barriers A major barrier to connecting persons with disabilities and the services and activities Centers for Independent Living (CIL) offer is due to geography and transportation. 1. Identify Affordable, Accessible Transportation: If public transportation is available: a) The CIL could collect and disseminate a directory of transportation services currently available in their service area by contacting local and state entities to identify who they serve and what type of services are available. Local resources could include: i) Disability service programs. ii) Senior programs. iii) County, and city transportation officials. iv) Consumer organizations. b) Distribute existing transportation directories. c) Participate in local transportation boards. d) Assume an advocacy role for adequate, accessible, affordable transportation within the service area. 2. Building Bridges to Your Consumers: While it may not always be possible for a consumer to get to a Center, here are some possible solutions: a) Allocate sufficient resources in budget for travel. b) Link with local entities, such as social service organizations, consumer groups, health care agencies, in collecting and sharing information about programs and services. c) Establish a policy for consumers to call free (e.g., toll-free line, collect calls), asking staff to return their call. d) Establish satellite offices or telephone numbers at local community organizations, churches, service clubs, consumer groups, and the like. e) Be creative in coordinating services with consumers in various locations, (e.g., malls, parks, or where the consumer is comfortable). f) As resources allow, set-up video-conferences. g) If consumers have computers, the CIL might investigate: i) Sharing information on the Internet. ii) Using e-mail. iii) Establishing Web sites and chat rooms. iv) Researching ways to obtain computers and technical support to persons with disabilities. Implementation and Evaluation After the staff or board of a Center for Independent Living (CIL) consider the five elements of developing effective outreach, it is important to take the information collected and incorporate the information into an action plan for implementation. 1. Implementing an Outreach Action Plan: a) Target a specific cultural group, neighborhood, or community. b) Assign an outreach team and team leader for specific group targeted. c) Collect and review information and materials about the target group. d) Develop a time line of outreach objectives and desired outcomes. e) Develop a budget (for bigger projects). f) Implement initial outreach efforts. 2. Evaluating Outreach Effectiveness: No outreach effort can be considered successful without conducting an evaluation of the of the CILs efforts to reach an unserved or underserved group. Adaptations of Crimando and Riggar (1988) identify three types of evaluation that can be useful: a) Formative Evaluation: Formative evaluation is a series of activities performed to improve outreach through the design and implementation process. For example: i) Have an expert review and comment on the content validity of the outreach objectives and effort. ii) Make changes in the outreach approach based on various information and data collected. iii) Try a smaller scale outreach ''tryout'' and revise the effort according to feedback gathered from the target group. b) Process Evaluation: Process evaluation answers the question: How successful was the design of the outreach effort? i) Takes place during and after the implementation of the outreach effort. ii) An outreach evaluation (usually one page) is a useful method for gathering feedback from the participants in the outreach effort. iii) Make changes to the outreach effort based on feedback from the completed evaluations and interviews. c) Outcome Evaluation: Outcome evaluation answers the question: Did the CILs outreach efforts have the intended effect on the group, neighborhood or community? Outcome evaluations measure the impact that the outreach effort reached and the unserved or underserved persons with disabilities who have benefitted. i) Review data collected from 704 Reports to verify increased outreach efforts to a previously unserved or underserved group (e.g., disability group, minority group, geographic group). ii) Calculate a cost benefit analysis which may be useful in future grant proposals for outreach efforts. iii) Evaluate the success based on the satisfaction level of the persons reached through the CIL's outreach effort. References Crimando, W. & Riggar, T. F. (1988). Handbook for in-service training in human services. Southern Illinois University Press. McDonald, G. & Oxford, M. The history of independent living. Rehabilitation Act of 1973, 1992 Amendments: Section 21. INDEPENDENT LIVING AND REHABILITATION PARADIGMS The following paradigms (models) were developed by Gerben DeJong in his paper, "The Movement for Independent Living: Origins, Ideology, and Implications for disability research," March, 1979. DeJong used this table to describe the differences between traditional rehabilitation and the independent living movement. Rehabilitation Paradigm Independent Living Paradigm Definition of problem Locus of problem Solution to problem Social role Who controls Desired outcomes physical or mental impair- ment; lack of vocational skill in the individual professional intervention; treatment individual with disability is a "patient" or "client" professional maximum self-care; gainful employment dependence upon professionals and others in the environment; in the medical and rehabilitation process barrier removal; advocacy; self-help; consumer control individual is a "consumer" of services consumer independence through control over acceptable choices for daily living "The Movement for Independent Living: Origins, Ideology and Implications for Disability Research" may be available from the University Center for International Rehabilitation, Michigan State University, East Lansing, Michigan. Community Advocates Training Manual Developed by Cassie James and Nancy Salandra Liberty Resources, Inc. 1341 North Delaware, Suite 105 Philadelphia PA 19125 Class #1 ETHICS The Community Advocate must recognize the need for consumer freedom of choice. Under circumstances where this is not possible, the Community Advocate must apprise the consumer of restrictions that may limit their freedom of choice. 1. The Community Advocate's primary obligation is to respect the integrity and promote the welfare of the consumer. 2. The Community Advocate's relationship and information resulting from that relationship must be kept confidential. 3. When the consumer's situation indicates that there is clear and imminent danger to the consumer or others, the Community Advocate must take reasonable action or inform responsible authorities. 4. The Community Advocates must inform the consumer of the purposes, goals, techniques, rules of procedures, and limitations that may affect the relationship before the advocate relationship is begun. (SETTING LIMITS) WHAT IS A COMMUNITY ADVOCATE? COMMUNITY ADVOCATE is the use of active listening and problem-solving skills to support people who are our peers. A "peer" is often defined by context. You may be a peer in terms of gender, race, age, or cultural background. Being a peer is also situational. When you are in school, your fellow students are your peers. When you are at a job, your colleagues at work are your peers. In context of this training program, a disabled Community Advocate is someone who acknowledges having a disability and does individual advocacy with another disabled person. Acknowledgement of one's disability means being more conscious of the range of feelings and experiences each of us has as a person with a disability. The basic premise behind Community Advocate is that people are capable of solving most of their own problems of daily living, if they are given the chance. The role of the Community Advocate is not to solve another person's problems -- but rather to assist the person in finding his/her own solutions. Community Advocates do not tell people what they "should do", nor do they give advice. Instead, the Community Advocate helps the person to discover solutions to his/her problems by listening, sharing experiences, exploring options and possible resources, and giving support. Also, you will do individual advocacy for people living in nursing homes and activism on the issues that affect all people with disabilities. A COMMUNITY ADVOCATE'S GUIDELINES 1. A Community Advocate takes into account his own wishes, values and beliefs. 2. A Community Advocate knows how and when to make referrals. 3. A Community Advocate's primary responsibility is listening to the consumers and acting as an advocate for the consumer. 4. A Community Advocate has developed communication and relationship-building skills. 5. A Community Advocate respects the wishes, rights, values, and beliefs of the consumer. 6. A Community Advocate maintains confidentiality. 7. A Community Advocate promotes empowerment. She/he believes that the best intervention, is no intervention. 8. A Community Advocate works in close collaboration with a trained advocate. CONFIDENTIALITY Agreeing to become a Community Advocate means agreeing to accept a trust. Confidentiality is the cornerstone of your relationship with both the Center and the persons you'll be working with as a Community Advocate. Confidentiality means that the Community Advocate relationship itself, and all the information you learn from this relationship is kept between you, the other person, and the Community Advocates instructors. This includes not only things you consider as sensitive topics, but also any information (even the fact that you are a Community Advocate to someone). This rule of thumb is essential to maintain trust as a Community Advocate and fulfill your responsibilities as a consultant. Confidentiality is something you can not be too careful or strict about. There are only two exceptions when you can share information: (1) when the other person specifically gives permission (try to share only information that is necessary); and (2) when the person you are working with is in a life-threatening situation. It may be difficult as times to resist relaying information. Particularly if you feel that sharing the information would ultimately help the person you are working with. Or that the person wanting to know more has the other person's best interests at heart. Just remember, there are no exceptions without the person's permission. A simple, firm, "I am sorry, but I can not share that information", will suffice. Stick to your guns! Class #2 MATERIAL FROM THE SUPPORTED LIVING WORKSHOP AT TEMPLE You and I by Elaine Popovich. I am a resident. You reside. I am admitted. You move in. I have behavior problems. You are rude. I am noncompliant. You don't like being told what to do. When I ask you out to dinner, it is an outing. When you ask someone out, it is a date. I don't know how many people have read the progress notes people write about me. I don't even know what is in there. You didn't speak to your best friend for a month after they read your journal. I make mistakes during my check writing program. Someday I might get a bank account. You forget to record withdrawals from your account. The bank calls to remind you. I celebrated my birthday yesterday with 5 other residents and 2 staff members. I hope my family sends me a card. Your family threw you a surprise party. I am on a special diet because I am 5 pounds over my ideal body weight. Your doctor gave up telling you. I am learning household skills. You hate housework. I am learning leisure skills. Your shirt says you are a "couch potato". My case manager and other professionals set goals for me for next year. You haven't decided what you want out of life. Someday I will be discharged-maybe. You will move onward and upward. Source: MO TASH, The Missouri Chapter of the Association for Persons with Severe Handicaps, Elaine Popovich works with Lutheran School Services in Midland, Missouri. [This omitted section includes If Heaven Isn't Accessible, God Is in Trouble! by Tari Susan Hartman - a sketch of Wade Blank's life and his untimely death. It includes this quote: "Wade used to tell me I could do anything I want to do. He said I didn't need him or anybody to live a good life. Now I've got to prove he was right. Wade was like a daddy to me. He did more for me than my real daddy did. We're going to miss him," says George Roberts."] [This omitted section is an excerpt from the APF Reporter, Winter 1991, by Joseph P. Shapiro entitled "Forcing the Young Into Nursing Homes" which recounts the story of Jeff Gunderson, who has cerebral palsy, returning to one of the nursing homes where he lived from the time he was 18 until he turned 27. Here is one quote which captures the essence of the objective of the story, i.e. to characterize nursing homes as a place of imprisonment and dehumanization: "The two nursing homes where Gunderson lived were set up to care for the elderly, not for the young. Gunderson was required to follow the same regimen as the generally sickly, elderly people around him. This made it easier for the nursing home staff. He went to bed at 7 p.m., the same time as his first roommate, a man in his 80s. His food was bland, unseasoned, often a form of gruel made for older residents who could not eat solid food. Gunderson admits he rebelled: 'I'd have fits.' Gunderson says, the staff tried to break him. Sometimes aides tied him to his bed. They would drag him into cold showers as punishment. To make him use the bathroom, on a schedule convenient for the nurses, they would put ice cubes down his pants. It was a form of torture for Gunderson, since the cold set off his spastic muscles. On several occasions, Gunderson says he was given a suppository before sleep and since he could not move by himself, he would spend the night lying in his own feces. (Officials at both homes say they are unaware of the incidents and that such practices would have been against their policies.) Until his last years in this second home, days were spent in bed watching soap operas. 'Many times I wanted to kill myself.' he says, I planned it, too.'"] Class #3 LISTEN. When I ask you to listen to me and you start giving me advice, you have not done what I asked. When I ask you to listen to me and you begin to tell me why I shouldn't feel that way, you are trampling on my feelings. When I ask you to listen to me and you feel you have to do something to solve my problem, you have failed me, strange as that may seem. Listen! All I asked was that you listen, not talk or do - just hear Advice is cheap; twenty cents will get you both Dear Abby and Billy Graham in the same newspaper. And I can do for myself. I'm not helpless. Maybe discouraged and faltering, but not helpless. When you do something for me that I can and need to do for myself, you contribute to my fear and inadequacy. But when you accept as a simple fact that I do feel what I feel, no matter how irrational then I can quit trying to convince you and get about this business of understanding what's behind this irrational feeling. And when that's clear, the answers are obvious and I don't need advice. Irrational feelings make sense when we understand what's behind them. Perhaps that's why prayer works, sometimes, for some people because God is mute, and He/She doesn't give advice or try to fix things. "They" just listen and let you work it out for yourself. So please listen and just hear me. And if you want to talk, wait a minute for your turn - and I'll listen to you. LISTENING & RESPONDING Have you ever started to tell someone something important and then decided they weren't interested in what you were saying? How about those times you struggled to explain a feeling and the person misunderstood or jumped to a different conclusion? When it comes down to it, communication is hard work! Communication is so much a part of our lives that sometimes it's hard to explain or describe exactly how we do it. This section is intended to give you a broad overview of the different things that go into developing open, clear channels of communication with another person, and ways to sharpen the skills in the ways we listen and respond to others. Our goal is for you to become aware of how you communicate so that you can be as helpful as possible to the other person in a Community Advocate relationship. Body Language Few people realize how much we use body language every day. Think about what you do when you try to get a waitress' attention: whether you sit up more straight, try to establish eye contact, wave a hand or clear your throat, you are signalling, "I'd like to talk with you". Or what about those times in school when you desperately didn't want to answer a teacher's question? You might have slouched, looked down or away, or started to concentrate on your note-taking. It is important to remember that because a disability may affect non-verbal messages, there is the possibility of misinterpretation, both by you and the other person. Take some time to think about whether your disability affects the non-verbal messages you send. For example, it may be that your disability makes it difficult or impossible to lean forward. What are other verbal and non-verbal ways you use to show interest: an enthusiastic voice, good eye contact, nodding your head? Also, if the person you're working with continually sends you mixed messages (verbally and non-verbally saying different things), it can be helpful to check that out with that person by making some non-threatening observations (i.e., "Sometimes I get confused, because you tell me you are interested in doing that with me, and yet you seem so distant by your tone of voice".) It's important you make sure this kind of checking back is not seen as criticism, but your attempting to understand them better. Listening. Listening is important in all types of Community Advocate relationships, whether they are of an emotional or informational nature. To listen means trying to understand what the words mean to that person, which may be quite different from what they mean to you. Try to put your own judgements and values aside so you can focus on what his feelings and views are, and just what it is that he is trying to tell you. Listening in this manner requires you to be actively involved, and means: giving all your attention to the other person, not looking around, thinking about how you're going to respond, or anything else. At that moment, the other person and his message is all that you're tuned into. being attentive, yet relaxed. Relaxed will help you hear what the person is saying to you. It's likely that if you are relaxed, he will sense that and feel more at ease too. being sensitive to what feelings the person is expressing, in both verbal and non-verbal ways. Sometimes we can get so caught up with the details of a situation a person is telling us that we tune out his feelings and reactions. You can get a sense of feelings by watching his non-verbal messages, and making note of the intensity with which he describes the situation. hearing the other person out. Interrupting someone to finish what you think he's saying, can mean jumping to the wrong conclusions. Interrupting can also be interpreted that you feel what he has to say is not important, or that you really don't want to listen. Sometimes it can take a while for the person to put into words how he is feeling; giving time for that to happen is important! Responding. There's no specific time that you stop listening and start responding, or vice versa. You are always responding to the people you're around--through your actions as well as the words you say, and don't say. Continue to keep attuned to the other person's reactions and listen throughout your conversation with him/her. There are many different things we could discuss in this section, but instead we'll focus on a few basic points to keep in mind: If you don't understand what someone's trying to tell you, be honest and let him/her know! A simple "I'm not sure I understand what you mean", or "I'm getting a little confused", lets the other person know you do want to understand and are willing to take the time to know what he/she is saying. If you are still uncertain or are have difficulty, ask for and example of what he/she means. Trying to bluff your way through a conversation can lead you into making assumptions that may not be accurate. By being honest, you can spend your energies on his concerns, and not on trying to backtrack from your bluff. Other phrases you can use: "Can you tell me more about that"?, "I'm not clear on how you feel ".. Don't feel pressured to find a quick solution. Being a Community Advocate does not mean you know everything or have easy, pat answer for everything that comes up. Remember that some of the concerns you hear may have taken a while to develop, or may include a lot of factors. Sometimes, too, there's no good answer or solution, in which case your listening may be the most helpful thing you can do. It's a good idea to summarize what you've heard the other person tell you before you get too far into the conversation. A simple summary of what you've heard lets the other person know how you've heard his/her message. Paraphrasing can be annoying to the other person if you continually use the same phrase over and over (i.e., "I hear you saying...") Here are some other phrases you can use, (or better yet, use your own style): "You feel angry because..."; "you've decided to ..."; "You'd like me to ..." Note that you don't agree or disagrees with that he's said but merely summarize or restate it. Let's consider an example: "I can't believe how that salesman ignored me! I'd been waiting there for over 20 minutes!!" "You were mad about that". (A)--"Yeah, I really was! Can you believe that jerk"? (B)--"Well, not really mad, but hurt and frustrated that he treated me l like I wasn't really there!" (C)--"I don't have time to be mad about it--I just decided to take my business where I'm treated like a person." (D)--"Well, no. I guess he was busy. It probably wasn't intentional." (E)-- No response. There are probably endless variations or responses to this particular situation, but let's look at each of the five responses. With "A", you've hit the nail on the head because the person confirms that, yes, that's what he/she was feeling. In this instance, your simple summary lets him/her know you have heard what he/she said and that you're in the same wavelength. With "B", your summary was not exactly accurate, but the person clarified and explained more clearly how he/she was feeling. This is a perfect example of all those times we think we are in tune with the other person, only to find out that we may have interpreted his comments on a different slant. By checking back with this person, you have given that person an opportunity to explain more clearly how he/she was feeling. Although you hope to "hit the nail on the head" all the time, it's not necessary, or possible; what is essential is to communicate the message that you're trying to understand what he is feeling or saying. "C" is like "B", except that your interpretation was farther afield. Perhaps this is a sign you need to be listening more carefully. Were you responding more from how you'd feel in this situation? Still, the lines of communication are open, and it was helpful to check back because he/she has cleared up the discrepancy. If you need a lot of re-explanation from the other person, you may want to think about sharpening up your listening skills--it may not be the other person who's giving unclear messages. "D" is one more variation. It may be that at times you read the other's comments correctly, but that when you are-- state it, or make an observation, it may be too honest or scary for the person to admit it. For example, someone may have been told for so long that anger is not good to feel that he may deny feeling it. Use your own judgement on whether he needs to be vague you to assist him in clarifying actually how he does feel. In any case, there's no point in insisting or pushing your observations on him. Until you have an establishing rapport, confrontation will not provide a basis for him to trust you with his inner thoughts and feelings. With "E", if the person doesn't volunteer a reaction to your summary, ask him to react to what you thought he said. Some may be hesitant to disagree, and by asking, you've essentially given them permission and communicated once again that you want to know how they feel. Some others may have just never had close relationship with someone where feelings are shared. By asking for reactions, you are started to model how people can get to know and understand each other better. [The next segment of the Community Advocates Training contains several newspaper articles which are not reprinted here.] Stop the bus by Yvonne Latty, Daily News Staff Writer.... [Tells the story of a demonstration by members of Disabled in Action of Pennsylvania, ADAPT of Philadelphia and Consumer Connection, protesting inaccessible buses.] PHILADELPHIA INQUIRER SEPTA's board forced to adjourn by protesters angry about service By Ralph Cipriano, INQUIRER STAFF WRITER. [This article reports how disabled protestors disrupted a transit authority board meeting because, rather than spending the required 3 percent of its budget on services for people with disabilities, SEPTA was spending only 1 percent.] DOWN WITH IGNORANCE COME SUPPORT A RALLY TO HELP US SHOW PHILADELPHIA MAGAZINE HOW LITTLE THEY KNOW ABOUT THE ADA AND PEOPLE WITH DISABILITIES HELP EDUCATE D. HERBERT LIPSON PLACE: 1818 MARKET STREET (1818 BLDG.) DATE: WEDNESDAY, APRIL 13, 1994 TIME: 12 O'CLOCK NOON FOR MORE INFORMATION CALL CONSUMER CONNECTION 581-0684, TDD 581-0664 DIA CALL CASSIE JAMES 581-0642 ALEJANDRO A. ALVAREZ, DAILY NEWS They've got a bone to pick. "Eliot Kaplan, editor of Philadelphia Magazine (right), meets with about two dozen angry protesters yesterday outside the publication's offices at 18th and Market streets. The demonstrators, many of them disabled and in wheelchairs, were protesting an 'Off the Cuff' column by publisher D. Herbert Lipson that was critical of the Americans with Disabilities Act. Lipson, who was out of town, called some of the act's requirements 'wacky' and 'dumb-headed.'" CURB CUTS...NOW!! COME TO A SUPPORT RALLY TO GET MAYOR RENDELL TO COMPLY WITH OUR ADA GIVEN RIGHTS PLACE: CITY HALL (WANAMAKER SIDE) DATE: TUESDAY, DECEMBER 21, 1993 TIME: 1 O'CLOCK P.M. LET'S PREVENT ANOTHER UNNECESSARY DEATH FOR MORE INFORMATION CALL CONSUMER CONNECTION 581-0644, TDD 581-0664 DIA CALL CASSIE JAMES 581-0642 PROTEST 50 blockade Ridge's office Group seeks more home care attendants By Peter J. Shelly. Patriot News "...seven activists took over Governor Carlson's St. Paul office and refused to leave 'until he looks us in the eye' one ADAPT protester said...." Majority whip declares war on the ADA "House Majority Leader Dick Armey, Republican of Texas, picked a hometown venue - a meeting with about 700 supporters in Irving, Texas - to announce that the ADA is a disaster. A what? Sharing the stage with Armey in Dallas were 45 people with mobility impairments. (The auditorium was not accessible so they got plopped up on the stage.)...." [The source(s) of the following documents are not identified.] Adapt Storm DC Photo: Tom Olin "That's Mike Ervin of Jerry's Orphans in the foreground of this very strong crowd. See more May action heroes throughout this issue." Jesus wept [This is an article about the apparent opposition of the National Council on Independent Living's Board of Directors to ADAPT's activities. This is followed by the offering of "Worstest CIL in the Country Contest."] ADAPT Goes to Washington - a summary Monday, May 15 [This article reports on an ADAPT march of about 500 activists to Washington D.C. to demand a meeting with HHS Secretary Donna Shalala. Shalala agreed to meet with a small ADAPT delegation on Tuesday....] Tuesday, May 16 ["The ADAPT delegates who met with Shalala demanded that 25% of Medicaid dollars earmarked for nursing homes be redirected to attendant services...."] Wednesday May,17 ["ADAPT'S hundreds stormed the Suburban Maryland, headquarters of Manor Care, Inc., the third largest nursing home chain...."] People who advocate freedom, yet deprecate agitation, are people who want crops without plowing the ground. They want the rain without the awful roar of the thunder and lightening. Without struggle, there is no progress. This struggle might be a moral one. It might be physical one. It might be both moral and physical, but it must be a struggle. Power concedes nothing without a demand. It never did and it never will. --Frederick Douglas (1817-1896) who led the fight against slavery. Stephanie Says We're not the pariahs that we used to be. An interview with Stephanie Thomas by Josie Syzek [This interview tells how Stephanie Thomas joined forces with ADAPT in 1985. Over the years, she has become one of ADAPT's most visible leaders. Today, as ADAPT's national organizer, she gives training to start-up ADAPT groups and edits the ADAPT magazine, Incitement. It continues with information on how local chapters get going, including strategies when the group is small and inexperienced. She goes on to emphasize the importance of staying focused on one issue and how to keep people involved.] COMMUNITY ADVOCATES AGENDA CLASS #4 I. Role Play 35 minutes II. Break 10 minutes III. Activism video 20 minutes IV. Discussion 1 hour, 15 minutes HOMEWORK: Read Independent Living Philosophy THINGS NOT TO DO AS A COMMUNITY ADVOCATE 1. DO NOT let the person's problems bother you. Keep in mind that all problems can be solved. Your role is to provide a positive and objective outlook. 2. DO NOT be suggestive. Do not tell the person what you think of his/her problem/s. Encourage the person to tell you more about their problem/s from his/her point of view. 3. DO NOT interpret for the person. Ask what the problems mean for him or her. 4. DO NOT point out answers or give advice. Answers are no good to the disabled person until he/she has worked them out for him/herself. You may offer suggestions, but be sure to allow the person to make the final decision/s. 5. DO NOT react emotionally. The correct attitude for you as a Community Advocate is one of interest and relaxed concern. Know that indifference is not helpful, nor is any display of sympathy. 6. DO NOT sympathize. Always hold out the expectation for the person that he/she will be able to resolve problems and issues for him/herself. WHEN TO OFFER RESOURCE GUIDANCE ALL THE TIME! Offering resources is part of letting the person know that he/she can make choices. When the problem has been identified and the feelings about it have been talked about, you may offer ideas and resource information. Encourage the person to think about which resources would best benefit his/her needs. ADAPT TRAINING [adapted from ADAPT's community organizing materials - for more information call ADAPT at 512-442-0252] Social Service and Organizing: Thinking Like an Organizer People Power: How and Why it Works Issue Development Negotiation Developing Winning Strategies What Goes Into an Action Planning and Action De-briefing Building your Local Organization 1. Keeping the Network together 2. Using Local Actions 3. Fund Raising ADAPT American Disabled for Attendant Person Services Today Social Worker Work with the System Follow Rules Do Not Include You Solve Problems For You Takes Power Makes A Mess Stereotypes People Keeping A Job Perfect Standard Personal Individual Rights Organizer More respect Expectations Gives Power Giving Job Away Gives Control Peer Political Rights Helps you solve your problems ISSUE DEVELOPMENT Concerns: Too big to be addressed directly Issues: What you can address individually and locally Examples of concerns: 1. World hunger 2. Homelessness 3. AIDS Examples of issues: 1. Soup Kitchen. 2. Neighborhood Renovation Project. 3. Educating a 5th grade class. Try to get people involved and they will support you on the issues even if they do not care - but it might mean money to them. (Issue; example:; curb cuts mean local contractors would do the work of cutting the curbs, receiving payment and employing people.) Make the issues more emotional to you, so supporters will begin to also care about the issues. (Example: the Herb Lipson editorial made people crazy.) ADAPT FREE OUR PEOPLE STRATEGIES -- THE ROUTE TO CHANGE A strategy's aim is to change the balance of power--to force the enemy to deal with you. REMEMBER, YOU WANT SOMETHING THEY DON'T WANT TO GIVE. WE CAN BE LIKED AND NOT GET WHAT WE WANT, OR WE CAN GAIN RESPECT BY DEMANDING WHAT WE WANT. BE DIRECT -- DON'T BE AFRAID TO ASK. Strategies should engage your people, should have two goals: 1. Win a victory, a change for the better. 2. Empower your people, change how they think of and feel about themselves for the better. A winning strategy should: 1. Be logical and acceptable to the people. 2. Be outside the experiences of the enemy. 3. Attack the weakest point of your enemy. 4. Should attract other power bases to your side. 5. Should be varied, so enemy doesn't adjust to it. 6. Should be fun. 7. Embarrass the enemy, or make them look foolish. The enemy determines the level of conflict. They can stop the conflict at any level... by coming to the table. THE PURPOSE IS TO GET US TO THE NEGOTIATION TABLE. STRATEGIES 1. TO WIN 2. PUT THE OTHER PERSON OFF BALANCE 3. CONFLICT AND CONFRONTATIONAL ORGANIZING EXAMPLE: SIDEWALK FOR ALL BUT NOT SOMEONE USING A WHEELCHAIR BECAUSE THERE IS A LACK OF CURB CUTS. A) INVOLVE YOUR PEOPLE AND BE ACCEPTABLE TO THEM AS FITS THEIR VALUES. B) INVOLVE OTHER PEOPLE/ORGANIZATIONS C) ADDRESS YOUR ENEMY AND WHEN THEY ARE VULNERABLE, EMBARRASSING THEM, HITTING THEM FINANCIALLY D) VARY TACTICS E) POWER IN NUMBERS, COMMUNITY, FUN, MAKE IT A THEATER... BRING IN THE MEDIA F) ACT AS A TEAM G) LOCATION, TIMING, VISIBILITY H) LONG TERM/SHORT TERM OUTCOMES... BUILDING PROCESS I) OUTSIDE THE EXPERIENCE OF YOUR ENEMY... DOING THINGS J) RE-EVALUATE, DE-BRIEF K) ATTRACTING OTHER PEOPLE, POWER BASE... ATTRACT ATTENTION L) ALWAYS KNOW WHO IS IN CHARGE ADAPT FREE OUR PEOPLE NEGOTIATIONS - Things to Know 1. ALWAYS NEGOTIATE FROM AN ONGOING POSITION OF POWER. 2. ONLY NEGOTIATE WITH THE POWER - THOSE WHO CAN MAKE DECISIONS. 3. NEGOTIATION SPECIFICS -- KNOW WHAT YOU WANT. A. Frame each demand in a yes or no manner. B. Prioritize your issues -- which can you give up and which can't you. C. Negotiate one issue at a time. 4. PREPARE FOR NEGOTIATIONS CAREFULLY, AS IF THIS IS THE MOST IMPORTANT MEETING OF THE ORGANIZING DRIVE. IT IS! A. Know and use your research -- use real life examples before statistics. B. Set deadlines for completing negotiated agreements. C. Decide on alternative strategies, solutions ahead of time. D. Try and think like your enemy. Know their arguments and have answers ready. E. Role play. It helps relieve tension for the real thing. 5. ASSIGN A CHIEF NEGOTIATOR AND SUPPORT ROLES. A. Chief negotiator leads discussion -- doesn't do all the talking. B. Support roles -- Everyone should know their job. 6. EVERY ISSUE NEGOTIABLE -- DON'T BE TOO RIGID. 7. USE THE CAUCUS WHEN NECESSARY -- EXPECT THE UNEXPECTED. A. Breaking off to discuss will give you a chance to share new ideas, give you time to think. 8. EVERY AGREEMENT MUST HAVE A FOLLOW UP. A. Disclosure: What facts must be disclosed to ensure that the agreements reached are being kept? B. Monitoring Process: How will agreements be monitored? Accountability Sessions Written Information Reports Tours 9. CONFIRMATION OF ALL AGREEMENTS MUST BE IN WRITING. A. Signed agreement. B. Letter of confirmation, stating the agreements reached. 10. KEEP YOUR CONSTITUENCY INFORMED SO THEY ARE READY TO GO BACK INTO ACTION IF NECESSARY. 11. EVALUATE YOUR NEGOTIATION SESSION, IT CAN ALWAYS GET BETTER. 12. CELEBRATE THE VICTORY!!!!!!!! ADAPT FREE OUR PEOPLE WHAT DOES IT TAKE TO MAKE A GOOD ACTION? 1. Who is the enemy? Make it a person. a. Find out as much about them as possible, where do they live, are they on any boards, where do they go to church, do they belong to any clubs, etc. 2. What specifically are the demands? a. Frame them yes or no answers, not - "Will you work with us, help us cooperate. b. Need timeframes or deadlines. c. What are your up front demands? Your fall back position? 3. Scout the hit. Many want to have an A.B. do this so you don't tip that you are coming. a. How many doors? How many are accessible? Locked/unlocked? b. Stairs? Accessible/Non-accessible routes. c. What type of security do they have? d. Where is the office/place in the building we want to get to? e. What is the fastest way to get there? f. How many elevators and where are they? g. Where are the nearest bathrooms? Food? Water? 4. Production a. How are we going to produce our people? b. Are there any groups that would support us, churches, etc. Make sure these groups are support groups and do not bring along a different set of demands. 5. Transportation a. How specifically are we going to get our people there? Who is going to pick up whom? b. Build in time for people using public transit. 6. Do we need anything special? a. Food, water, umbrellas, blankets, attendants, spray bottles, etc. b. Tell people what to bring; specific tasks and general. 7. How are we going to dramatize the issue? a. Falling out of chairs and crawling up the stairs. b. Coffin. c. What else? 8. Fliers and posters. Supplies? Make up chants and slogans. 9. Decide on roles. a. Leadership team, usually these are the first ones in the door, they may also be the negotiating team. b. Who talks to the police? c. Who talks to the press? d. Who leads songs, chants? e. Who coordinates transportation? f. Who makes fliers, posters? g. Who makes press calls? h. Who will be the runners? ADAPT FREE OUR PEOPLE KEEPING THE NETWORK TOGETHER DEVELOPING YOUR LOCAL GROUP FIND PEOPLE Start with people you know & build from there. You don't need tons of people, at least to start. A small committed group can get a lot done. Keep getting the word out about ADAPT, your actions and other events, let other groups know what you are up to. Always put a contact name and number out on poster and other materials. People like food. KEEP THEM INVOLVED Must address their needs, help with things like: Transportation, Attendant services, etc. at your meetings, actions, and other events. People want to be involved, want things to do. Plan Together what we will be doing. Get together to do stuff, Don't Meet Just to Meet. DO THINGS! Personal involvement is not something to get bogged down in, but will show you are concerned about each person, this is also a good way to monitor what people care about and want to work on. Hard cord members versus soft core ones. Different folks will have different levels of involvement at different times. Tolerance, There are lots of different kinds of folks involved, or who might get involved. The more you can focus on your issues and NOT on who does what and with whom, the more folks you will attract. Everyone doesn't have to agree on every issue. KEEP FOLKS INFORMED Mailing list and telephone lists, keep them and use them. Keep in touch and let people know what is happening. THE IMPORTANCE OF LOCAL ACTIONS Gives folks something to be part of, something to tell stories about, gets your name out, builds the group's power. You can use other kinds of events for many of these too. DON'T LET STRUCTURE TAKE OVER Let issues and involvement lead your way. Sometimes when people get organized they get so into the structure of what they are doing, they ignore the substance. Stay away from honchos, titles - the kinds of things that have a way of stirring up jealousy and similar distractions. FUN -- FUN -- FUN -- MAKE IT FUN -- Life is full of downers. You can offer something better which will attract other folks and keep you energized at the same time! Life is short...Eat dessert first. Make your actions and other events fun. Celebrate your victories. USE NATIONAL ACTIONS TO RECRUIT National actions are expensive, but really fire folks up. IF YOU ARE BIG, OR AT LEAST SPREAD OUT, OR YOU ARE LITTLE WITH OTHER GROUPS NOT TOO FAR AWAY, Regionalizing is sometimes a way to expand your power-base: Just as national ADAPT sometimes does national actions with everyone doing something locally at the same time, you can do that too within your state. Also, don't forget it can be very helpful to support each other. Connecting with other groups, inviting folks from a nearby group in another city or state to join you on really big actions helps boost your numbers, and you can return the favor. ASK YOURSELF... What groups do you like being a part of? Why? Which have been bad experiences? Why? ORGANIZING A GROUP Start with people you know. Small is all right. Use word of mouth. Have phone numbers, and contact names. Go to other groups and events (ex. fairs, special events), taking fliers...Attract People. Keep People Involved. Give people things to do...Real Things To Do! Do not just meet to gather...Use Time. Feel part of the Team...Action Makes You Strong. Make it fun and serious...Vary. Knowing you make a difference, Power is keeping people informed. Have phone meetings (conference calls). Be issued orientated. Support each other regionally. ADAPT FREE OUR PEOPLE OUR FUNDRAISING IDEAS (Fundraisers that have worked to raise money for folks in our network) THE KEY TO FUNDRAISING IS ASKING. IF YOU DO NOT ASK FOR MONEY YOU WILL NOT RAISE ANY. 80% of donations are given by individuals to individuals. Get your members involved and helping to raise funds. Don't worry if you are not a non-profit group , not 501 (c)(3). -- Lots of groups which are not incorporated, and/or are not tax-exempt raise lots of funds, just be up front about this. -- If you need tax-exempt status for a specific reason, non-profit groups will sometimes act as your fiscal sponsor. Often we focus on the reasons people or businesses would not want to give us money, This is common, but not very helpful. Instead, think of reasons when you are asking for money. WAYS ADAPT GROUPS HAVE USED TO RAISE MONEY Fun Run Exposition Basketball Game Wheelchair Santa Claus Raffles Signed ball from a winning sports team Donated, or bought travel tickets, equipment, etc. Sales (t-shirt, Buttons, Candy, etc.) Garage Sales Direct Mail Fundraising letters Use your members Friends of your group Folks who make living from disability, (MD, PT, etc.) Get support from CIL, other local groups you work with FUNDRAISING Candy Bars Garage Sales Fun Run Car Wash Sell t-shirts, Button, etc. 50/50 Tickets Dollar in a hat (give half to the winner, keeping the other half) Bingo Get out of jail - Buy to get player out Sell crafts Sell lunches (homemade) Dance, Concerts Silent Auction Bake Sale Santa Claus How To Ask For Money Who Gives/Places to Go: Doctors, OT, Landlord, Family, Friends, Bureaucrats, Legislators, Businesses, Medical Supply Companies, Pharmacies, Churches, Civic Groups You are not raising money for yourself...You are Raising Money For The Cause Terminology of Rallies Training Advocacy Conference Outreach and Training Empowering Training Civil Rights Leadership Training Disability Rights [This section, which is omitted here, is an article entitled, "Expect I Too Much?" author unknown, originally published in German, Das Band 4/83. In it the author laments not having friends because of the "handicap."] The Start of the Independent Living Movement A. Beginning of IL Movement: Much of the movement results from reactions to the above attitudes and behaviors, i.e. our history. IL represents rebellion against the traditional system. B. First CIL in Berkeley, CA. This is the model that most generic CILs follow today. C. Boston, CILs in California, Massachusetts, Michigan, and Texas centers started around the same time. IL is a reaction to the traditional service delivery system and particularly the "medical model." Many early CILs had a mix of "IL philosophy" and "medical model" because of funding patterns. D. The "Medical Model" assumptions: A. Physician is technically competent expert. B. Medical care should be administered through a chain of authority wherein the physician is the principal decision-maker. C. The "patient" is expected to assume the "sick" role. D. The main purpose of medicine is the provision of acute/restorative care. E. Illness is muted primarily through the use of clinical procedures such as surgery, drug therapy and the "laying on of hands." F. Illness can be diagnosed, certified, and treated by trained practitioners. E. The Sick Pole - People with disabilities are expected to play this or the "impaired role." The sick role consists of two interrelated sets of exemptions and obligations: 1. A sick person is exempted from "normal" social activities and responsibilities depending on the nature and severity of the illness. 2. A sick person is exempted from any responsibility for his/her illness. He/she is not morally accountable for his/her condition and is not expected to become better by sheer will. In exchange: 3. A sick person is obligated to define the state of being sick as aberrant and undesirable, and to do everything possible to facilitate his or her recovery. 4. A sick person is obligated to seek technically competent help and to cooperate with the physician in getting well. Because disability is often an irrevocable part of a person's existence, the person with the disability begins to accept not only the condition but also the belief that his or her very own personhood is aberrant and undesirable. Moreover, he or she begins to accept the dependency prescribed under the sick role as normative for the duration of the disability. F. The Impaired Role - The impaired role is ascribed to an individual whose condition is not likely to improve and who is unable to meet the first requirement of the sick role, i.e., the duty to get well as soon as possible. Occupants of the impaired role have abandoned the idea of recovery altogether and have come to accept their condition and dependency as permanent. The impaired role is not a normative one or one prescribed by the medical model, but is a role a disabled person is allowed to slip into as the passage of time weakens the assumptions of the sick role. The dependency creating features of the medical model and the impaired role are most pronounced in institutional settings. Quote: Patients are encouraged to follow instructions, rules and regulations. Compliance is highly valued, and individualistic behavior is discouraged. The "good" patient is the individual who respectfully follows instructions and does not disagree with the staff. On the other hand, the patient who constantly asks for a dime for the pay phone, a postage stamp, or a pass to leave the institution on personal business, tends to be treated as a nuisance or labeled "manipulative." Patients do not make their own appointments, keep their own medical charts, or take their own medications. Responsibility for these things is legally vested in the institution. Yet on the day of discharge, the patient is expected to suddenly assume control of his own health care and life decision-making. Corcoran, 1978. Does this quote bring to mind other service providers (besides institutions) which create the same role for the person with the disability? G. Rehabilitation originates in the medical model and flows from "medical" practice. This is one reason why a medical evaluation or diagnostic is necessary for service delivery. H. Independent Living originates in reactions to the dehumanizing process inherent in the medical model and to the need for civil rights, equal access and equal opportunity. I. Centers for Independent Living represent the reality of this reaction. They also represent the convergence of five other social movements of the 1960s - the period of U.S. history which saw great social change as mentioned above. According to Gerben DeJong in his paper, "The Movement for Independent Living: Origins, Ideology and Implications for Disability Research," these five social movements created the necessary atmosphere for the current activities of both the disability rights movement and the development of centers for independent living. Centers still emphasize the primary principles of these other five movements in their services and advocacy approach. Starting with the Center for Independent Living (CIL) in Berkeley, California in the late 1960s, disability rights and independent living concepts merged into one operational organization. Essentially individuals with disabilities joined together to protest their exclusion from society's mainstream and to demand more humane, non- medical attention from the nation's service delivery system. By 1972, there were at least five states where CILs similar to the Berkeley model had been established. These new organizations, run by people with disabilities for people with disabilities, were trying to respond to a rising demand from the disabled community for control over their own services. 1. Much of this demand sounds like the civil rights movement led by African-Americans during the 1950s and 1960s. People with disabilities pointed out that -- just like other minorities -- they were being denied access to basic services and opportunities such as employment, housing, transportation, education and the like. Like Rosa Parks, people with disabilities want and need to be able to ride the bus. The only difference is that Rosa Parks as an African-American woman was not permitted to sit in the front of the bus while people with disabilities just want to get on the bus. 2. Consumerism, a movement led by well-known national figures such as Ralph Nader, contributed another element to the growing disability rights and independent living movement. People with disabilities were, for the first time, stressing their role as consumers first and "patients" last. In other words, individuals with disabilities wanted the right to educate themselves and decide for themselves what services and products they wished to purchase (even if a third party was paying for the service or product). As "clients" or "patients," people with disabilities were rarely given any autonomy or power over the services and products they would use. 3. Self-help is nothing new in the United States, but organized self-help programs are relatively new. The original non-professional, self-help program which is best known in the U.S. is Alcoholics Anonymous. Having a severe disability may not be exactly the same as having a problem with alcohol, but a strong parallel remains. Leaders of the disability rights and independent living movement believe that only persons with disabilities know best how to serve others who have the same or similar disabilities. The concept of "peer" counseling and self-help groups are the most common methods of self-help. 4. De-medicalization and de-institutionalization share certain common characteristics. De-medicalization for people with disabilities means removing the involvement of medical professionals from the daily lives of individuals with disabilities. People with disabilities are not "sick." They are disabled and not dependent upon medical professionals for every day needs. The perfect example of a "de-medicalized" service for persons with severe mobility disabilities is that of "personal assistance." Personal assistance is a consumer-directed service whereby the person with the disability recruits, hires, trains, manages, and fires his or her own personal assistants. When consumers with disabilities are allowed to buy the services they need for daily survival from whomever they choose, they have "demedicalized" the service. Unfortunately, the vast majority of services provided to people with disabilities are still rooted in the "medical model," regardless of the individual's needs and desires. 5. De-institutionalization, which began in response to large mental health facilities for those who are mentally ill or mentally retarded, follows the principles of de-medicalization. Most institutions are staffed by medical personnel, even if residents are not ill. Since many such individuals are only disabled by some permanent type of condition, placement in institutions is inappropriate and far more costly than providing those same residents with the support services they need to live in their chosen communities. The disability rights and independent living movement is working towards the development of those other non-medical and community-based services which would assist institutionalized persons to move back to their home towns or areas. The disability rights and independent living movement Is a compilation of all five social movements as they pertain to and are defined by people who have disabilities. Since most traditional rehabilitation programs are built upon the "medical model" of service delivery, the disability rights and independent living movement promotes a completely different approach to service, delivery. Independent living as a movement is quite unique compared to existing programs and facilities serving people with disabilities. Centers for independent living across the nation are working toward changing their communities rather than "fixing" the person with a disability. CILs were originally defined by the first CIL in Berkeley and now are commonly referred to as consumer-controlled, community-based, non-residential not-for-profit organizations providing both individualized services and systems advocacy. See the paradigms chart on the next page. From Independent Living: History and Philosophy to Implementation by Maggie Shreve. [This section, HISTORY OF INDEPENDENT LIVING By Gina McDonald and Mike Oxford, is omitted here since it is a duplication of the same article which begins on page 39 of this training manual.] READINGS FOR THE INDEPENDENT LIVING AND DISABILITY RIGHTS MOVEMENT DeJong, Gerben. "Independent Living: From Social Movement to Analytic Paradigm." Archives of Physical Medicine and Rehabilitation 60 October 1979: 435-446. DeJong, Gerben. "Physical Disability and Public Policy." Scientific American 248, no. 6 (June 1983): 40-49. DeJong, Gerben. Environmental Accessibility and Independent Living Outcomes: Directions for Disability Policy and Research. East Lansing: University Center for International Rehabilitation, 1981. DeJong, Gerben and Janice Hughes. Report of the Sturbridge Conference on Independent Living Services. Boston: Tufts Medical Rehabilitation Research and Training Center, 1981. Fasser, Carl E., Quentin Smith, Lex Frieden, Laura W. Smith, J. David Holcomb. "Addressing the Health Care Needs of People with Disabilities." Journal of the American Academy of Physician Assistants 7, no. 1 (January 1994): 26-32. Kailes, June Isaacson. Disability Pride: The interrelationship of Self-Worth, Self-Empowerment, & Disability Culture. Houston: ILRU Program, 1993. Kailes, June Isaacson, and Darrell Jones. A Guide to Planning Accessible Meetings. Houston: ILRU Program, 1993. Kailes, June Isaacson. Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center. Issues in Independent Living No. 8. Houston: ILRU Program, 1988. Lachat, Mary Ann. An Evaluation and Management Information System for Independent Living. Staying on Track: ILRU Program, 1988. Lachat, Mary Ann. The Independent Living Service Model: Historical Roots, Core Elements, and Current Pratice. Hampton: Center for Resource Management, 1988. National Council on the Handicapped (now the National Council on Disability).Toward Independence: An assessment of Federal Laws and Programs Affecting Persons with Disabilities - With Legislative Recommendations. February 1986. Available from NCD, 1331 F Street, NW, Suite 1050, Washington, DC 20004, (202)272-2004 (V), 272-2074 (TTY). National Council on the Handicapped (now the National Council on Disability).On the Threshold of Independence: A Report to the President and the Congress of the United States. January 1988. Available from NCD (see above). Nosek, Peg, Yayoi Narita, Yoshiko Dart, and Justin Dart. A Philosophical Foundation for the Independent Living & Disability Rights Movement. Occasional Paper No. 1. Houston: ILRU Program, 1982. Pfluger, Susan Stoddard. Independent Living. Emerging Issues in Rehabilitation. Washington, DC: Institute for Research Utilization, 1977. Richards, Laurel and Quentin Smith. An Orientation to Independent Living Centers. Houston: ILRU Program, 1987. Shapiro, Joseph P. No Pity. New York: Random House, Inc. 1993. Shreve Maggie, Patricia Spiller, Eric Griffin, Nancy Waldron, and Lynda Stolzman. Martha Williams, ed. Consumer Control in Independent Living. Available from: Center for Resources Management, 2 Highland Road, South Hampton, NH 03847; (603) 394-7040 (V/TTY), 394-7483 (fax). Smith, Quentin; Lex Frieden, and Laura Richards. "Independent Living." Encyclopedia of Disability and Rehabilitation. New York: Macmillan, Inc., (in press, 1994). Smith, Quentin, Laura W. Smith, Kym King, Lex Frieden, and Laura Richards. Health Care Reform, Independent Living, and People With Disabilities. Issues in Independent Living No. 11. Houston: ILRU Program, 1993. United States Department of Education. Comprehensive Evaluation of the Title VII, Part B of the Rehabilitation Act of 1973, as Amended, Centers for Independent Living Program. January 1986. Available through clearinghouses (see below). Willig, Chava Levy. A People's History of Independent Living. 1988. Available from the Research and Training Center on Independent Living, 4089 Dole Building, University of Kansas 66045; (913) 864-4095 (V/TTY). In a special edition on independent living in American Rehabilitation 20, no. 1 (Spring 1994): Giordiano, Gerard and Bruno J. D'Alonzo. "The Link Between Transition and Independent Living," 2-7. Shreve, Maggie. "The Greater Vision: An Advocate's Reflections on the Rehabilitation Act Amendments of 1992," 8-13. Smith, Laura W., Quentin W. Smith, Laurel Richards, Lex Frieden, and Kym King. "Independent Living Centers: Moving Into the 21st Century," 14-22. Chappell, John A., Jr. "The Whole is Greater Than the Sum of its Parts," 23-29. Moore, J. Elton and Barry C. Stephens. "Independent Living Services for Older Individuals Who are Blind: Issues and Practices," 30-34. Montagano, Tim. "Bringing the Rehabilitation Family Together: An IL-VR Partnership," 35-36. Lougheed, Val, Bev Hunter, and Susan Wilson. "Partners for Independence: A Team Approach to Community-Based Rehabilitation," 37-38. Baker, David. "Independent Living in Communities: The Role of the Independence Fund in Vermont," 39-41. Lachat, Mary Ann. "Using the Power of Management Information System Technology to Support the Goals of Centers for Independent Living," 42-48. In a special issue on independent living in OSERS 6, no. 2 (Winter-Spring 1994): French, Duane. "Independent Living: Driven By Principles of Democracy," 37-38. Kafka, Bob. "Perspectives on Personal Assistance Services," 11-13. Kenneddy, Jae, Hale Zukas, and Simi Litvak. "Independent Living and Personal Assistance Services: The Research, Training, and Technical Assistance Programs at the World Institute on Disability," 43-45. Mathews, Mark R. "Learning from the Experts: Best Practices in Rural Independent Living," 23-29. Michael, Robert E. "Title VII: A Major Step Forward," 8-10. Nelson, John. "Changes in the Rehabilitation Act of 1973 and Federal Regulations," 4-8. Smith, Quentin, Lex Frieden, Laurel Richards, and Laurie Gerken Redd. "Improving Management Effectiveness in Independent Living Centers through Research and Training," 30-36. Tate, Denise and Julie Daugherty. "The Effects of Insurance Benefits Coverage: Does It Affect Persons with Spinal Cord Injury?" 19-22. Westbrook, John D. "Consumer-Driven Supported Employment: Consolidation Services for People with Significant Disabilities," 14-18. Ziegler, Martha. "How Parent Networks Are Working with Independent Living Centers," 39-42. In a special issue on rural independent living in the Rural Special Education Quarterly 11, no. 1 (1992): Clay, Julie Anna. "Native American Independent Living," 41-50. Curl, Rita M., Shanna M. Hall, Linda A. Chisholm, and Sarah Rule. "Co-workers as Trainers for Entry-level Workers: A Competitive Employment Model for Individuals with Disabilities," 31-35. Nosek, Margaret. "The Personal Assistance Dilemma for People with Disabilities Living in Rural Areas," 36-40. Potter, Carol G., Quentin W. Smith, Huong Quan, and Margaret A. Nosek. "Delivering Independent Living Services in Rural Communities: Option and Alternatives," 16-23. Richards, Laurel and Quentin Smith. "Independent Living Centers in Rural Communities," 5-10. Seekins, Tom, Craig Revesloot, and Maffit. "Extending the Independent Living Center Model to Rural Areas: Expanding Services through State and Local Efforts," 11-15. Smith, Quentin W., Carl E. Fasser, Stacy Wallace, Laurel K. Richards, and Carol G. Potter. "Children with Disabilities in Rural Areas: The Critical Role of the Special Education Teacher in Promoting Independence," 24-30. We Won't Go Away, videocassette. Sells for $20 each, including postage, from the World Institute on Disability, 510 16th Street, Suite 100, Oakland, CA 94612, (510) 763-4100 (V), 208-9493 (TTY). The Disability Rag. A bi-monthly publication reflecting ideas and discussions in the disability rights movement. Available at $12 for a one-year subscription. Write to: Subscriptions, The Disability Rag, 1962 Roanoke Avenue, Louisville, KY 40205, (502) 459-5343 (V/TTY/fax). Most of the readings cited above can be obtained from resource clearinghouses. Several are listed below and can be reached for further information about publications and modem-accessible databases by mail or telephone. National Clearinghouse of Rehabilitation Training Materials, Oklahoma State University, 816 West Sixth Avenue, Stillwater, OK 74078, (800) 223-5219. National Rehabilitation Information Center (NARIC), 8455 Colesville Road, Suite 935, Silver Spring, MD 20910, (800) 346-2742 (V), 227-0216 (TTY). ERIC Clearinghouse on Disabilities and Gifted Education (formerly the ERIC Clearinghouse on Handicapped and Gifted Children), 1920 Association Drive, Reston, VA 22091, (800) 328-0272 (V/TTY) at the Council for Exceptional Children, (703) 620-3660, ext. 307 (V). ILRU also offers a number of publications and other materials on various independent living subjects. For a listing of resource material contact ILRU at 2323 S. Shepherd, Suite 1000, Houston, TX 77019, (713) 520-0232 (V), 520-5136 (TTY). For resource material and technical assistance on the Americans with Disabilities Act, there are ten regional Disability and Business Technical Assistance Centers (DBTACs). One toll-free number, 1-800-949-4232, will direct your call to a technical assistant in your region. Resource materials are published by the US Department of Justice and many are available free of charge. The Southwest DBTAC in Houston, Texas offers technical assistance and some resource material in Spanish as well as English. Developed by the IL NETWORK: NCIL/ILRU National Training and Technical Assistance Project. Requests for technical assistance on this and other independent living subjects may be directed to the IL NETWORK Project, c/o ILRU at (713) 520-0232 (V), 520-5136 (TTY), 520-5785 (Fax), or NCIL at (703) 525-3406 (V), 525-3407 (TTY), 525-3409 (Fax). COMMUNITY ADVOCATES AGENDA CLASS #5 I. Video "When Billy Broke His Head" 1 hour II. Discussion of video 30 minutes III. Break 10 minutes IV. Independent Living philosophy and how it started 20 minutes A) Consumer directed vs. medical model B) Discussion and questions V. Attending behavior 15 minutes VI. Role play 45 minutes 1. What's the first skill? The first skill is ATTENDING BEHAVIOR which is body language. This involves eye contact, posture, gestures, intonation, and facial expression. 2. But can't eye contact vary from person to person, or culture to culture? So you can't assume that just because a person does not look you in the eye, that he/she is hiding something. It may be a cultural expression denoting respect or it may be a way of determining appropriate personal space. 3. What posture should I take as a Community Advocate? Whatever posture in which you feel comfortable. Be you! 4. Who starts the conversation? Again, use a phase that will open up the discussion, such as: "What's up? How may I assist you today?" 5. What if I run out of things to say? Let the person lead, and you should follow. Your job is to respond and ask questions that will increase knowledge of the person/situation. Keep interruptions minimal and avoid changing the subject to fit your agenda. 6. That will be hard, because people usually ask me my opinion and I tell them what I think. What should I do? Try practicing verbal following with a friend or family member, or a stranger you happen to start a conversation with. You will know when someone starts to open up to you. 7. Are there verbal, non-verbal clues I can use? Yes. Such as "uh/huh", "huum." There are also non-verbal clues like smiling, frowning, looking puzzled, nodding, and leaning forward in interest. Remember the person's personal space. ATTENDING BEHAVIOR: BODY LANGUAGE AND BASICS; OPEN AND CLOSE QUESTIONS. 1. BODY LANGUAGE: Components are eye contacts, posture, personal space, gestures, and facial expressions. Review the meaning of these terms briefly. (Group Discussion) A. What are some of the cultural variations in body language? B. What are some of the disability-related variations in body language? C. Taking into account culture and disability, what are some examples of body language we might easily misinterpret? D. What does body language tell us about ourselves as Community Advocates? 2. VERBAL FOLLOWING: This is different from ordinary conversation, where each person may be pursuing his/her own line of thought. In using verbal following, it is important for you to let the other person determine the course of conversation while you simply respond or ask questions. Keep interruptions to a minimum and avoid "topic jumping" or changing the subject; although it may be difficult at first. Also, avoid giving advice or judging the other person's motives, thoughts, or behavior. At first, avoid sharing your personal experiences or comparing notes. Remember, you are not responsible for solving the problem!!!! ATTENDING 1. Put aside what you were doing and give the person your full attention. 2. Maintain a friendly, relaxed manner. 3. Stay as close as you can without making the person too anxious. 4. Keep your body trunk and major appendages orientated toward the person - maintaining a slight forward lean most of the time. Avoid assuming a rigid, frozen posture. 5. Maintain eye contact, but avoid staring. 6. Give the person ample opportunity to respond to you first by communicating a readiness to listen. 7. Develop expressive gestures which encourage the help to continue communicating such as; smiling, nodding, and hand movements. 8. If the person doesn't begin to - or continue to communicate verbally, then you respond to him or her. A. Try to avoid introducing extraneous material such as small talk, questions, etc. B. Really look at the person and try to imagine what is happening and put this into words. REFLECTING FEELINGS 1. What makes this tricky? Feelings are too private, embarrassing or powerful to deal with directly, words and non-verbal expression do not match; one's culture. 2. The use of reflection of feelings, says that you see what is happening and that it is okay.It gives permission to "own" feelings and validated them. 3. Since talking about feelings is a limited experience, our vocabulary may be equally limited. Talk about your comfort or discomfort. Discuss your feelings. 4. In reflecting feelings, of what do you need to be aware? A. Notice both verbal and non-verbal communication. B. Be sensitive to appropriate time to reflect back. C. How to ask questions that elicit feeling. D. How to reflect without interpreting. 5. Differences between reflecting feeling and active listening. The trainer makes an expressive statement. Ask someone to paraphrase; someone to reflect and/or elicit feelings. (GROUP SUMMARY AND REVIEW) COMMUNITY ADVOCATES CLASS #6 SHARING Part of the beauty of a Community Advocates relationship is that from sharing experiences or feelings, others can realize they aren't the only person who's ever felt a certain way. While we have all shared with friends or family, there are additional issues to consider as a Community Advocate. Some of these are highlighted below: Sometimes wanting to find and share similarities can mean you don't listen as well. Being eager to show that you know how a person feels, or that you've "been there", may mean you become less sensitive to what he/she is actually saying. At times, it is tempting to break in with "I know just what you mean", but unless you hear him/her out, how can you be sure? On the other hand, just reflecting or clarifying what someone's telling you can make you seem distant or aloof. It helps to show you're human; even if your feelings or reactions are different from his/her, you let the other person get a glimpse of you, and that can become a building block for developing trust in each other. It can be a hard balance at times to determine what and how much is appropriate to share. Here are some questions you can ask yourself before you decide to share your feelings and/or experiences: 1) Is the person at a point or frame of mind where he/she will hear me? 2) Will my sharing help him/her or could it cause more distress? 3) Am I sharing because I don't know what else to say? 4) Am I unwittingly getting into a "can you top this" contest? 5) How related is my experience to his/her? Consider whether sharing it might get you off the track, and discussing something other than his/her concern. 6) Does the person need all the details of my particular experience? How can I best sum up the most important points? 7) What limits do I have? Are there certain subjects I find tough to talk about?  Being a Community Advocate does not mean your life is an open book. It is okay for you to set limits on what you are willing to share with the other person. A simple "Boy, that's hard for me to talk about" or "I guess I'd rather not talk about that" can get the message across in a way that is honest and caring, but still firm. Most people appreciate this kind of honesty, too.  Only you can decide how much feels right to share with another person. We have talked about your building trust in your Community Advocate relationship, and realistically trust goes both ways. It's important to realize that while you, as a Community Advocate, understand and practice confidentiality, the folks with whom you are matched may not be as a discreet. If an issue seems particularly difficult for you, or you are uncertain, perhaps you need to preface comments you'd rather they didn't share with others. Sometimes nothing more than "I'd like this to be between just you and me" or "This is something pretty private--I don't share this with just anyone" may be all that's needed. You may find that you have to screen your comments if you aren't sure how widely they will be shared. THOSE WHO KNEW..... "Hate filled," Those who knew said. And he climbed sleepily into my lap. He buried his tousled head in my cool green sweatshirt and wrapped his grubby arms about my neck... "Uncontrollable, those who knew said. And he lay quietly beside me listening to my fairy tales and lullabies... "Refuses to participate," those who knew said. And he took my hands and let himself be led into the midst of dancing and singing... "Will not cooperate," those who knew said. And he stood beside me drying the dishes I had washed... "Will not speak," those who knew said. And he walked through the forest, talking of birds and squirrels and flowers... "Incapable of love," those who knew said. And he planted a slobbery little boy kiss on my cheek... "Hopeless," those who knew said. And he sang with me of stars and happiness...He smiled with me at silly jokes... THOSE WHO KNEW FORGOT ABOUT LOVE Source unknown REFLECTING FEELINGS 1. What makes this tricky? Feelings are too private, embarrassing or powerful to deal with directly; words and non-verbal expression do not match; one's culture. 2. The use of reflection of feelings, says that you see what is happening and that it is okay. It gives permission to "own" feelings and validated them. 3. Since talking about feelings is a limited experience, our vocabulary may be equally limited. Talk about your comfort or discomfort. Discuss your feelings. 4. In reflecting feelings, of what do you need to be aware? A. Notice both verbal and non-verbal communication. B. Be sensitive to appropriate time to reflect back. C. How to ask questions that elicit feeling? D. How to reflect without interpreting? 5. Differences between reflecting feeling and active listening. The trainer makes an expressive statement. Ask someone to paraphrase; someone to reflect and/or elicit feeling. GROUP SUMMARY AND REVIEW A VOCABULARY FOR FEELINGS abandoned discouraged incompetent accepted disinterested inflamed affectionate disparate insecure afraid dissatisfied insignificant alarmed dispassionate jazzed amazed distressed jealous angry ecstatic joyful annoyed elated lonely anxious embarrassed longing appreciative empty loving apprehensive enthusiastic miserable approval envious misunderstood ashamed euphoric needed balmy excited negative belittled exhilarated neglected belligerent fearful nervous bitter friendly numb bored frustrated passionate bottled up furious pleased calm futile pressured capable grateful proud competent guilty put down confident happy puzzled conflicted hateful reborn confused helpless regretful contented hopeless rejected crushed horny rejecting defeated humble rejuvenated depressed humiliated relaxed desolate hurt relieved desperate identification resentful despondent inadequate sad satisfied sensual serene sexy shocked startled surprised tearful tense terrified threatened thrilled transcendent trusting uncertain uncooperative understood uneasy unhappy unloved upset uptight vengeful vindictive wanted warmhearted worthless worthy yearning COMMUNITY ADVOCATES CLASS #7 I Feedback 50 minutes A) Sandwich Technique B) Confrontation - Is it really for the consumer? II Break 10 minutes III Movie - "Gabby" 2 hours HOMEWORK: Read sexuality material and solve individual advocacy problems. [This omitted section is a poem entitled, "To My Other Bodies" by Concetta (Connie) Panzarino, Spinal Cord Injury LIFE, National Spinal Cord Injury Association, Falkl 1992, page 29. In it she talks about her relationship with her personal assistants.] FEEDBACK Part of what a Community Advocate relationship can accomplish is giving people a taste of what a close, sharing relationship can be like. A close relationship is one in which two people can express their concerns and feelings in an honest and caring way. Being able to give feedback---both positive and negative--is an important part of developing this relationship. At times, we all find feedback hard to give. Offering feedback means taking a risk, because those at the other end may misunderstand, misinterpret, or think our comments are stupid. Because of this risk, we sometimes find excuses for not being open and honest, and as a result, the relationship never gets too deep or personal. What are some of the concerns we may have?  I'm not sure he/she can handle it. People are not as fragile as we sometimes think they are, especially if we give feedback in appropriate ways. Honestly expressed in a caring way tells the other person you feel he is worth the time and effort, and that you think he/she can handle feedback.  The reaction may be terrible, or he/she may take it wrong. Sometimes this is an excuse to prevent the discomfort of taking the risks of giving feedback. Try to think about what will happen if you don't give that feedback. It is important to highlight that feedback in a way of giving constructive information to help another person become aware of how his/her behavior affects you. Some general guidelines to follow for giving feedback are outlined below:  Have you built up trust with the other person? At the beginning stages of your Community Advocate relationship, it is important to develop a basis of trust and caring with the person. Part of developing that may be done by giving him/her some positive feedback. It is essential that this positive feedback is sincere; compliments you really don't feel can ring hollow, and won't bring your relationship along on the basis of honesty. While you are building up this trust and caring, it may be important to filter out some of the negative feedback you give. Oftentimes, negative feedback given too soon may be seen as your rejecting him/her before you even know or appreciate his/her situation. Both of you can end up feeling unappreciated and frustrated. As the relationship develops, the person may be more open to your comments. At that point, it's critical to ask yourself the following questions before giving feedback.  What is the purpose of the feedback? The best interests of the person you're matched with are the criteria to use. If for example, giving feedback is a way for you to let off steam, then it's not appropriate because it's more for your benefit than his/her.  What is the person's frame of mind? Will the person hear what you have to say?  How much feedback can the person use (versus how much might you like to give)? It's best to keep feedback brief and specific. Loading people down with comments on a range of their behavior can be overwhelming and counterproductive. Also, focus your feedback on things you feel are feasible to change.  Is it an appropriate setting? Be sensitive to maintaining the respect and trust you have developed. Giving feedback in front of others, for example, can set back any trust you have built up. (This is very much tied to confidentiality.)  How recent is the behavior you want to comment on? Immediacy is important. It's not as constructive to give feedback on something that happened two weeks ago. To be most effective, your comments should closely follow the actions they refer to. And by all means don't "save up" incidents and wait for a good time to discuss them-- that can create a lot of defensiveness, and leave the person feeling overwhelmed. Now that you've decided the timing is right, how do you actually begin? Here are a few tips:  Never use "never" and always avoid "always". Absolutes are inaccurate, and create defensiveness, which will get in the way of the messages you're trying to convey. It's important to try to relay your message in a non-threatening way.  Make your comments descriptive, not evaluation. When you describe a situation and share your reaction to it, it shows how you perceived that situation. It's helpful to share that information. By sticking to observations, you don't try to guess their intentions. Trying to second-guess can become messy and create hard feelings, especially, if you've misread the situation. Sharing your observations gives a starting point for discussion. The person can see how their actions sometimes can be read in other ways than he/her might have intended.  Describe behavior. When you describe a situation, you are attributing your reactions to his/her behavior, not to him/her as a person. The underlying and very important message is that you accept him/her as a person, even if there are aspects of how he/she acted that frustrated or upset you.  Solicit his/her reactions to your feedback. Constructive feedback becomes an opportunity for the two of you to share your feelings and reactions. By inviting his/her reactions to what you've said, you are showing your concern and interest in developing your relationship, and indicating that you want to understand him/her. If the feedback you give implies some change could be made on his/her part, and the person decides he/she wants to change, he/she may want or need some help in how he/she can change. Try to share ideas rather than give advice, and take some time to discuss with him/her what he/she feels are his/her options are. Also, remember that positive feedback that is sincere is appropriate at any stage of relationship! Especially if someone is working on changing something, it's important to let him/her know you can see his/her efforts, or actually see some changes. As a summary, let's look at some examples: 1) "It's bad when people get so defensive." (evaluative impersonal, and general instead of descriptive of a particular situation) This could be changed to: "When you interrupt what I am trying to tell you, I get frustrated because I care about you and want to let you know how I feel." (personal and descriptive) 2) "I think you're getting better about that." (evaluative and general) This could be changed to: "I was glad you told me that Saturday would not be a good day to get together." (descriptive and specific) 3) "You always say that, but you never follow through." (use of absolutes and evaluative) This could be changed to: "You said you'd be willing to talk to your attendant about your frustration, but you haven't done it yet. Do you want to practice with me what you want to tell him/her?" (descriptive, specific, solicits reaction) 4) "Some people would say you're not very friendly." (not personal, general) This could be changed to: "When you're short with me on the phone like this, I wonder if you really want to talk to me. Is that what you want to tell me?" (personalized, specific, solicits reaction) 5) "You're really doing great!" (general, evaluative) This could be changed to: "I know you've been wanting to get out and meet more people. This the third time this month you've made a special effort to do that. I know it's been hard, but I'm glad you're sticking with it. How do you feel about it?" (specific, personal, solicits reaction) Community Advocates CLASS #8 SPINAL NETWORK Copy Right 1993 Spinal Network and Sam Maddox All rights reserved. This book may not be reproduced in whole or in part by any means, without written permission of Spinal Network and Sam Maddox, P.0. Box 4162, Boulder Colorado 80306. Cover Design by McCormick Design, Boulder, Colorado Library of Congress Cataloging in Publication Data Spinal Network [edited by) Sam Maddox - 2nd ed. Spinal cord-Wounds and injuries-Patients-Rehabilitation- Miscellanea. I. Maddox. Sam. 1950 [Lengthy excerpts from this book are included in the Community Advocates Manual but are omitted here. Some of the topics covered from pages 323 to 361 are:  Sexuality and spinal cord injury  Alternate approaches to sexuality  Medication and sexuality  Finding a partner  Handling catheters and other apparatus  Bowel and bladder accidents  Fertility and options for conception  Gay/Lesbian issues  Sexually transmitted diseases  Dating  Orgasm  Physicians/obstetricians  Birth control  Parenthood  Attitudes [The section includes articles from The Ragged Edge, The disability experience from the pages of the first fifteen years of Disability Rag, Avocado Press, 1994. First is a piece entitled "New Insights" by Edward L. Hooper - pages 78-81- in which the author describes what he learned about the meaning of sexuality, going from being a non- disabled man to one with a spinal cord injury. Next is an article entitled, "It's Time to Politicize Our Sexual Oppression by Barbara Faye Waxman, from pages 82-87. It discusses the effect of public laws which discriminate against individuals with disabilities who may need to and choose to perform sex in various alternate ways. It also covers financial disincentives for recipients of SSI and SSDI if they choose to marry, prejudice against brailled versions of such publications as "Playboy," sexual violence directed at people with disabilities and gay/lesbian people with disabilities, and prevailing public beliefs about the asexuality of people with disabilities.] [This omitted section is a poem from Disability Rag, March, April, 1992, entitled "Excavation" by Kenny Fries in which the author talks about words used to describe him such as "freak," "midget," and "three-toed bastard" and his emotional journey into the state of his body at birth.] [The next section includes excerpts from pages 15-22, Chapter 2, pages 51-60, Chapter 6, and pages 61-66, Chapter 7, Enabling Romance, no reference given. It covers the topics: B. "Shattering Sexual Stereotypes," i.e. that people with disabilities can't have sex, and tells the stories of several individuals who became disabled and learned how to answer questions of sexuality for themselves; C. "Sexual Variations and Alternatives," which discusses the myriad ways one can express their sexuality; D. "The Joy of Disabled Sex - Alone," which covers masturbation, prostitutes, fantasizing] [This omitted section includes definitions of various sex terms, from abortion to womb, and includes words such as clitoris, condom, ejaculation, hymen, ovary, scrotum, and venereal disease.] Community Advocates CLASS #9 ADVOCACY TECHNIQUES SELF ADVOCACY - EFFECTIVELY ADVOCATING FOR SELF Advocacy Cycle Need Advocacy Advocacy to enforce techniques (change/laws) Laws example: MH/MR Act example: Secton 504 5 P's of Advocacy 1. Purpose - problem, what must you want changed, goal. 2. Planning - how to get to goal; strategies, laws, use of effective communication, request meetings, make calls. 3. Preparation - where you do your work; records, laws, write letters, what laws do, acts give you the right...MOST IMPORTANT. 4. Persuasion - present case, outline demands and wants and explanation (use negotiation skills). 5. Perseverance - don't give up; work your way up the chain of command. GUIDELINES FOR ADVOCATES 1. Be informed of problems, know the facts. 2. Know the rules of the game before the meeting, what rules and laws can be used. 3. Focus on person and their problem and assist them in helping themselves. 4. Plan your strategy and be prepared to change that strategy. 5. Be flexible and creative. 6. Use resources in the community. 7. Make anger work toward your advantage, not against you. 8. Follow-up and don't give up. 9. In a meeting lay your cards on the table and express what you want and why. Three skills needed for Advocates Communication Planning Negotiation Communication: Be effective, assertive, not aggressive, use listening skills. Write letters, give a statement and explanation. Planning: Recognize need of consumer, what rights are being violated, and what goals are being affected. Requires research, what laws are relevant, and knowing the person's background. Use effective strategy; how will you solve the problem, who will do what , managing your time and be effective. Negotiation: Compromise to an extent, closest to you goals; part of due process. Understand resources available to you, making anger work for you; be creative. COMMUNITY ADVOCATES AGENDA CLASS #10 ADA Training 10minutes ATBCD - Access Video (Stop in between and discuss) 20 minutes Break 10 minutes Work in Progress 25 minutes Review Handouts 25 minutes Role Playing 45 minutes [This section includes training and technical assistance material from the Disability Rights Education and Defense Fund, Inc. It covers definitions of disability and Titles I, II and III of the ADA. The next part includes information on National Institute on Disability and Rehabilitation Research (NIDRR) funded projects for information, training, and technical assistance to businesses and agencies, i.e. Disability and Business Technical Assistance Centers, National Peer Training Projects, and Materials Development Projects. Third is an Americans With Disabilities Act Requirements in Public Accommodations Fact Sheet.] COMMUNITY ADVOCATES AGENDA CLASS # 11 I. Counseling Techniques 30 minutes II. Role Playing 20 minutes III. Break 10 minutes IV. Movie "Water Dance" 1 hour, 45 minutes COUNSELING TECHNIQUES Listening and Responding  Sit facing the person, not too close or far away.  Be attentive, sensitive to the feelings the person is expressing.  Hear the other person out, let them speak.  Be honest and let them know if you do not understand what they are trying to tell you.  Don't feel pressured to find a quick solution.  Summarize what you've heard the other person tell you before you are too far into the conservation. Sharing  Sometimes wanting to find and share similarities can mean you don't listen as well as you could.  Balance what is and how much is appropriate to share. ..Do Not Be An Open Book! Feedback  Build up trust with the other person before you give criticism.  Give a Positive Criticism.. Another Positive.  Think of why you are giving feedback; can the person handle it; know how much to give/is it the appropriate setting and are you communicating on recent behavior?  Never use never and always avoid.. Always.  Make your comments descriptive) not evaluate.  Describe behavior.  Solicit his/her reactions to the feedback. [This omitted section is a poem, entitled "Reading on a Relationship" by Virginia Satir.] PUBLICATION LIST ACCENT ON LIVING P.0. Box 700 Bloomington, IL 61702 ACCESS AMERICA Architectural and Transportation Barrier Compliance Board Suite 1000, 1331 F Street NW Washington, DC 20004-1111 (202) 484-0533 ADAPT/INCITEMENT 1319 Lamar Square Drive #101 Austin, TX 78704 (512) 442-0252 Voice/TDD, (512) 442-0522 Fax AMERICAN ATHLETIC ASSN. OF THE DEAF BULLETIN 1134 Davenport Drive Burton, MI 48529 BOOKS about DISABILITY 3463 State Street, Suite 282 Santa Barbara, CA 93105 (805) 683-9633 or (800) 333-6867, (805) 683-2341 FAX BREAKING NEW GROUND Breaking New Ground Resource Center Purdue University 1146 Agricultural Engineering Building West Lafayette, IN 47907-1146 800-825-4264, fax (317) 496-1115 CAREERS & THE DISABLED Equal Opportunity Publications 150 Motor Parkway, Suite 420 Hauppauge, NY 11788-5145 DEAF LIFE c/o MSM Productions, Ltd. Box 63083, Marketplace Mall Rochester, NY 14623-6383 DEAF USA Eye Festival Communications, Inc. 1530 N. 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Second Street, Suite 4 Harrisburg, PA 17101 (717) 238-0172, (717) 238-3433 (TTY) (717) 238-8663 (FAX) MAINSTREAM 2973 Beech Street San Diego, CA 92102 (619) 234-3138 MOUTH MAGAZINE 61 Brighton Street Rochester, NY 14607 (716) 244-6599, (716) 442-2916 (FAX) NAD BROADCASTER National Association of the Deaf 814 Thayer Avenue Silver Spring, MD 20910 (301) 587-1788 NATIONAL ASSOCIATION OF THE DEAF BOOK STORE 814 Thayer Avenue Silver Spring, MD 20910-4500 (301) 587-1788 (301) 587-4873 ONE STEP AHEAD 1050 Connecticut Avenue, NW Suite 1250 Washington, D.C. 20036 (800) 386-5367 (301) 324-0121 (FAX) THE RAGGED EDGE P.0. Box 145 Louisville, KY 40201 (502) 894-9492 (FAX) SILENT NEWS, INC. WilliamsvilIe Branch P.O. Box 23330 Rochester, NY 14692-3330 (716) 461-3681 (TDD) SPORTS N' SPOKES PARAPLEGIA NEWS 2111 East Highland, Suite 180 (602) 224-0500 (602) 224-0507 (FAX) TELECOMMUNICATIONS FOR THE DEAF 814 Thayer Avenue Silver Spring, MD 20910 (301) 589-3786 THE VOICE 11931 North Central Expressway #11 Dallas, Tx 75243 (214) 490-0860 NEW MOBILITY 23815 Stuart Ranch Road P.0. Box 8987 Malibu, CA 90265 (800) 543-4116 VOLTA REVIEW NEWSOUNDS Alexander Graham Bell Association for the Deaf 3417 Volta Place, NW Washington, DC 20007 (202) 337-5220 Bibliography Cormier, William, Interviewing strategies For Helper, P. 315, Brooks/Cole Publishing Company, 1985. Egan, Gerard, The Skilled Helper, Pages 30-34-35-73-126, 36-37-67-71,120-121, 37-156-172, 36-37-78-79, 134-151, 158, 37-94-151-155, Wadsworth Publishing, Inc. 1979. Bolton, Robert, People Skills, pages 93-95-269-73, 12-117-19-123-28, Prentice Hall, 1979. Excavation, Disability Rag, March, April, 1992. DREDF, Employment Title I, State & Local Government Title II, Public Accommodations & other Privately Funded Facilities Title III, Transportation Titles II & III. U.S. Department of Justice - Americans with Disabilities Requirements in Public Accommodations Fact Sheet. Gartner, Alan & Joe, Tom, Editors: Images of the Disabled Images, Copyright 1987 Prayer Publishers, pages 82-87. Buscaglia, Leo: The Disabled and their Parents: A Counseling Challenge, Holt, Rinehart, Wiston, Limited, 1983. Popovich, Elanie: You And I: MO TASH, The Missouri Chapter of the Association for Persons with Severe Handicaps. Gibson, Joan: Personal Profile: What It is like to be Mentally Retarded. Source Unknown: Those Who Knew. MOUTH. Panzarino, Concetta: To My Other Bodies, Spinal Cord Injury LIFE, National Spinal Cord Injury Association, Fall 1992, page 29. Das Band: Expect I Too Much?, 4/83. Friedberg, Joan Brest, Mullins, June B., Sukiennik, Adelaide Weir: Accept Me As I Am-Best Books of Juvenile Nonfiction On Impairments and Disabilities; 1985 pp.19-20. Kinnard, John: Going After Life, A New Voice. Vonnegut, Jr., Kurt: Harrison Bergeron, The Handicapped in Literature A Psycho-social Perspective, Edited by Eli M. Bower c1980 pp. 395-401. Incitement. APF Reporter - Winter 1991 - Forcing the Young into Nursing Homes, Joseph P. Shapiro. Independent Living: History & Philosophy to Implementation. Spinal Network & Sam Maddox 1987, Sex, Men by Jack Dahlberg, Women, Joanne James. Barrett Shaw, The Ragged Edge, The disability experience from the pages of the first fifteen years of Disability Rag, Advocado Press, 1994. INTRODUCTION The objective of a person at a Center for Independent Living (CIL), who is furnishing Information and Referral (I &R), is to determine, through explicit and implicit communication, what the individual's desires and needs are and be able to get them to verbalize this, and to furnish them with the tools (in this case, a plan of action, along with a telephone number) to fulfill these needs on their own. The following is a list of all requested numbers. There are also two I & R agencies listed, in addition to the one we have at Liberty Resources to further assist you. Resources: Advocacy Boarding Home Ombudsman 844-1910 CAP (Client Assistant Program) 557-7112 CARIE (Seniors) 545-5724 Civil Rights Division of Health & Human Services 596-0260 CLS (Community Legal Services) 893-5300 Mayor's Commission on People with Disabilities 686-2798 DIA (Disabled In Action) 627-7255 PILCOP (Public International Law Center) 627-7100 Education Board of Education (GED) 351-7024 ASB GED Program 627-0600 Employment HireAbility 587-3080 Vocational Rehabilitation 560-1900 Energy Coalition of Energy Crisis LIHEAAP (Low Income Energy Assistance) 560-2970 Emergency Food Hotline Housing Housing Consortium TAG (Tenant's Act Group) 895-5694 Homelink (Repairs) 628-4418 Information and Referral First Call for Help 568-3750 DELCO 891-5101 Recreation Carousel House 685-0160 Temple Program 204-6780 Transportation ParaTransit Information 580-2780 Reservation 580-7700 Monitor (Emergency) 580-7720 SEPTA 580-7800 Advocacy: Reality or Rhetoric Inventory Copyright ( ) June Isaacson Kailes Edition 11 - September 1999 Advocacy: Reality or Rhetoric Inventory Copyright ( ) June Isaacson Kailes Edition 11 - September 1999 Instructions: Read each item carefully and decide if it is TRUE or FALSE. Be tough - don't respond to a statement with "sometimes" or "sort of." Put a - ? - after items you don't understand or don't agree. Choose the top 5 items you feel your center needs to work on as soon as possible. Philosophy / Values 1. _____ Our center reinforces independent living philosophy with our staff, board, and volunteers through a process that includes performance appraisals, job descriptions, and open communication channels to correct any misunderstandings or inconsistent behavior. 2. _____ Our staff, board, and volunteers live self-determined life styles and support the principles of the disability rights/independent living movement in their private and public lives. 3. _____ Our center hires a mix of people, with and without disabilities, who are committed, passionate, and/or militant about the independent living movement and politically astute. 4. _____ Our staff, board, and volunteers are civil-rights oriented and promote a "rights bearing" attitude when representing our center to others. 5. _____ Our center's top priorities are systemic advocacy and social change. 6. _____ Our center is actively involved in a variety of progressive political issues such as civil rights implementation and enforcement, and active individual participation in community affairs. 7. _____ Our center actively participates in the state, regional, and national organizations of centers for independent living. 8. _____ Our center raises money for the specific purpose of social change, lobbying, advocacy, and community organizing. 9. _____ Our center refuses to submit proposals for grants and contracts requiring activities inconsistent with the principles and philosophy of independent living. 10. _____ Our board and management staff address issues of language and independent living philosophy when negotiating contracts for the center. 11. _____ Our center actively protests against the use of public funds for projects that undermine principles of independent living. 12. _____ Our center conducts and supports independent living value-based fund raising ( promotes productive and contributing images, correct language; attention paid to dignity; avoidance of evoking pity, guilt, and sympathy; etc.). 13. _____ Our staff, board, and volunteers correct language that is negative as well as stereotypical portrayals of people with disabilities. 14. _____ Our staff, board, and volunteers enhance our consumers' positive self-images and encourage identification with disability and the independent living/disability rights movement by promoting pride in disability culture. 15. ____ Our center rejects deficiency-oriented language used by service providers that overshadows many positive traits and skills of people and conveys messages of devaluation and dependence. 16. _____ Our staff, board, and volunteers use "disability-neutral" language and reject medical model, charitable, and deficiency-oriented language when communicating with people with disabilities and the public. 17. _____ Our center does not do for people with disabilities anything they can do or learn to do themselves. 18. _____ Policies consistent with the independent living philosophy guide our center in the delivery of all services. 19. _____ Our center bases a significant part of its success on the satisfaction of the people with disabilities in our community. Planning 20. _____ Our center includes consumers, staff, board and volunteers in developing and integrating the center's advocacy goals into our short and long range plans. 21. _____ Our center has a clear advocacy-based mission or purpose statement with clear advocacy goals and projected outcomes for how it will fulfill its mission and realize its vision. 22. _____ Our center allocates a percentage of the annual budget to support the center's systems advocacy effort. 23. _____ Our center bases its needs assessments on the consumer's view of what's wrong with the system and what are the systemic problems versus consumer needs? Training 24. _____ Our center (at least annually) conducts a clear, consistent and thorough orientation and training program on independent living philosophy for all our staff, board members, and volunteers. 25. _____ Our center views teaching advocacy skills and supporting self-advocacy and systems advocacy as a top priority. 26. _____ Our center trains and supports the development of strong and visible spokespersons with disabilities. 27. _____ Our center provides funding to send center representatives and up-and- coming advocates to local, state, and national meetings and conferences related to independent living and disability rights. 28. _____ Our center's top priority in service delivery is training people with disabilities to understand the independent living philosophy and how to advocate for themselves. Community Organizing 29. _____ Our center is a leader in local and state advocacy including active lobbying for public policy supportive of independent living philosophy and goals. 30. _____ Our center encourages advocates to use the center's phones, fax, computers, advocacy-oriented mailing lists, copying machines, clerical support, postage, space for meetings, occasional financial assistance with transportation, and staff assistance as needed and requested for disability-related advocacy activities. 31. _____ Our center assures individuals with disabilities testify at public hearings. 32. _____ Our center has set up local systems advocacy organizations. 33. _____ Our center has organized activists from the local community into a hardhitting disability coalition. 34. _____ Our center openly supports and sponsors demonstrations that are confrontational and/or contentious. 35. _____ Our center uses telephone, mail, e-mail and fax alerts as well as the world wide web, listserves, newsgroups as advocacy communication tools. Image 36. _____ The public sees our center as a social change organization primarily and a service provider secondarily. This is an evolving tool and comments from users are encouraged. Please feel free to improve or take exception to the material. If you disagree with items or know of additional items which should be mentioned, please let the author know. To keep informed of future revisions of this tool please send a note to the author, including where you obtained your current copy. Send comments and request to: Rhetoric C/O JUNE ISAACSON KAILES Disability Policy Consultant 6201 Ocean Front Walk, Suite 2 Playa del Rey, California 90293-7556 Phone 310.821.7080, Fax 310.827.0269 jik@pacbell.net http://www.jik.com Copyright 1993, Revised 1995, 1995, 1996, 1997, 1999 All rights reserved. This document is frequently revised. No part of this document may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, no known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without prior written permission from the author.