IL NET an ILRU/NCIL National Training and Technical Assistance Project Expanding the Power of the Independent Living Movement Diversifying Consumer Representation in Independent Living: Involving People with Cognitive Disabilities a National Teleconference Participant's Manual September 7, 2000 Contributors to the training materials: Carri George Dawn Heinsohn Darrell Lynn Jones Kristy Langbehn Raymond Lin Kathleen O. Mahoney Rosemarie Roberts 2000 IL NET, an ILRU/NCIL Training and Technical Assistance Project ILRU Program 2323 S. Shepherd Street Suite 1000 Houston, Texas 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (FAX) ilru@ilru.org http://www.ilru.org NCIL 1916 Wilson Boulevard Suite 209 Arlington, Virginia 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 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. Diversifying Consumer Representation in Independent Living: Involving People with Cognitive Disabilities Participant's Manual Table of Contents Agenda . . . . . . . . . . . . . . . . . . . . . . . . . . . . .i About the Trainers . . . . . . . . . . . . . . . . . . . . . . ii List of Trainers and IL NET Staff. . . . . . . . . . . . . . .iii About ILRU . . . . . . . . . . . . . . . . . . . . . . . . . . .v About NCIL . . . . . . . . . . . . . . . . . . . . . . . . . . .v About IL NET . . . . . . . . . . . . . . . . . . . . . . . . . vi Serving Adults with Cognitive Disabilities . . . . . . . . . . .1 ADA and Title III Guide. . . . . . . . . . . . . . . . . . . . .6 Access Strategies Chart. . . . . . . . . . . . . . . . . . . . 16 Counseling Strategies to Enhance the Vocational Rehabilitation of Persons After Traumatic Brain Injury . . . . . . . . . . . . 26 "When You Go Visiting & Invite the Company Home!" Center for Independent Living: Outreach Manual . . . . . . . 41 Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . 67 Diversifying Consumer Representation in Independent Living: Involving People with Cognitive Disabilities AGENDA September 7, 2000 I. Welcome and Overview II. Introduction A. Who are " we" and why are "we" doing this? B. Examples of Collaborative Efforts i. Welfare to Work Initiative ii. Transition Grant III. Making Accommodations A. Believing in People - Attitudes i. "No Limits" - Centers Must be the Role Model ii. Increasing Accessibility Within the Community a. Olmstead Case iii. Examples of Accommodations iv. Methods of inclusion: a. Staff b. Inclusion on Board of Directors c. Legislative Days and Other Legislative initiatives d. Planning Committees - Policy Setting e. Individual and Systems Advocacy IV. Dealing with Paternalistic Oversight Agencies A. Consumer Choice i. The Right to Fail ii. At What Cost Do We Weigh Choices iii. Sheltered Workshop Action Team (SWAT) Grant/Systems Change B. Consumer Directed Services i. Consumer Directed Home Care ii. Home and Community Based Waiver Services C. Closure i. Paradigm Shift Within Agencies Involving Community, the Networking and Collaboration With Others as Change agents in the Community V. Wrap-up ABOUT THE TRAINERS Kathleen O. Mahoney, CSW is Executive Director of the Learning Disabilities Association of the Mohawk Valley (LDAOMV) in Utica, New York. In this position she is responsible for administrative, programmatic and fiscal oversight of LDAOMV services throughout the association's nine county area in Central and Northern New York State. Ms. Mahoney is responsible for implementation of the association's Strategic Plan including expansion of services to previously un/underserved populations including adult services and welfare to work initiatives. Kathy holds a Master of Social Work (MSW) Degree from the University at Albany, State University of New York Nelson A. Rockefeller College of Public Affairs and Policy School of Social Welfare. She also received her Baccalaureate Degree from the schools undergraduate division with a double major in Theatre and Sociology. Jack Marcellus is Advocate and Service Coordinator at the Learning Disabilities Association of the Mohawk Valley in Utica, New York. Jack was diagnosed with dyslexia as a child and later with Attention Deficit Disorder as an adult. He credits his parents for their assertiveness in obtaining the supports he needed in school so that he was able to complete his education. As Advocate and Service Coordinator he assists individuals with Learning Disabilities to learn independent living skills and self advocacy skills. Jack holds an MPA from the Maxwell School of Citizenship and Public Affairs, Syracuse University. Rose Marie Roberts, CRC is the Associate Director of the Resource Center for Independent Living, Inc., Utica, New York and has been employed at the Center for the past 17 years. She is a certified rehabilitation counselor with a Master of Science in Rehabilitation Counseling from SUNY Albany, a BA in Behavioral Sciences, and a BPS in Human Services from SUNY College of Technology, and an Associates Degree in Human Services from Mohawk Valley Community College. She is one of the designated Regional Resource Development Specialist (for Head Injury) for the Department of Health covering the Syracuse/ Utica North Region. She has over 15 years of experience in working directly with and advocating for services for individuals with Traumatic Brain Injury and other cognitive limitations. Bill McDonald has been involved in providing independent living services and advocacy for the past six years. He has held his current position as Peer Advocate and Peer Counselor at the Resource Center for Independent Living in Amsterdam, New York for 1 « years. In this role he works with individuals with a wide range of disabilities but because of his personal experience with Traumatic Brain Injury (TBI) also has a specialty in providing services to this population. Bill assists with benefits, health care, dealing with systems, and exploring options for independent living. Bill has completed a B.A. in Psychology and some additional graduate studies. LIST OF TRAINERS AND IL NET STAFF TRAINERS Kathleen O. Mahoney Learning Disabilities Association of the Mohawk Valley 401 Columbia Street Utica, New York 13502 315-797-1253 (V/TTY) 315-797-4006 (FAX) LDAOMV@dreamscape.com Jack Marcellus Learning Disabilities Association of the Mohawk Valley 401 Columbia Street Utica, New York 13502 315-797-1253 (V/TTY) 315-797-4006 (FAX) LDAOMV@dreamscape.com Rose Marie Roberts Resource Center for Independent Living 401 Columbia Street Utica, New York 13502 315-797-4642 (V) 315-797-5837 (TTY) 315-797-4747 (FAX) Rose.Roberts@rcil.com Bill McDonald Resource Center for Independent Living 2540 Riverfront Center Amsterdam, New York 12010 518-842-3561 (V) 518-842-3593 (TTY) 518-842-0905 (FAX) williammcdrcil@yahoo.com IL NET STAFF ILRU Lex Frieden Laurie Gerken Redd Executive Director Administrative Coordinator lfrieden@ilru.org lredd@ilru.org Richard Petty Carri George Program Director Publications Coordinator richard.petty@bcm.tmc.edu cgeorge@ilru.org Laurel Richards Dawn Heinsohn Training Director Materials Production Specialist lrichards@ilru.org heinsohn@ilru.org ILRU Program 2323 S. Shepherd Suite 1000 Houston, TX 77019 713-520-0232 (V) 713-520-5136 (TTY) 713-520-5785 (FAX) ilru@ilru.org http://www.ilru.org NCIL Anne-Marie Hughey 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. SERVING ADULTS WITH COGNITIVE DISABILITIES by Darrel Christenson Tyrone Harrington Susan Webb The Problem Centers for independent living (CILs) are often criticized for not adequately serving individuals with cognitive developmental disabilities even though CILs are required to provide services on a cross-disability basis. This is understandable when considering the traditional method of service delivery for this population. Sheltered workshops and group homes, characteristic of developmental disabilities services, are contrary to the consumer-controlled, community-integration philosophy of CILs. Separate funding streams add to the problem. Although services for the developmental disabilities population in Arizona are funded with millions of federal and state dollars annually, approximately 90% of consumers with cognitive limitations receive only emergency services. They are not eligible for Title XIX funding unless they have a profound or serious cognitive limitation. Those consumers whose cognitive disability is considered moderate or mild receive no services unless in a crisis situation (e.g., homeless or sexually/financially exploited). Arizona's Division of Developmental Disabilities identified more than 3,000 consumers in this category statewide. Isolation, poverty, poor health and worse are often the conditions under which these consumers live. Consumer control, self-determination and community participation are the exceptions. The Alliance Arizona Bridge to Independent Living (ABIL) is a CIL that serves all of Central Arizona with a three-county rural and urban population of more than 3 million people, 62% of the state's total population. Continued massive growth during the past decade with no increase in Part C funding (other than cost of living adjustments) and no state funding at all for independent living services caused significant unserved/underserved conditions within our service area. ABIL's board of directors approved a strategic plan based heavily upon collaboration with other community-based organizations. Collaboration proved difficult when attempting to ensure partnerships with organizations that embrace the independent living philosophy. A natural partnership with our local Parent Training and Information Center (PTI) established under Title VI of the Individuals with Disabilities Education Act (IDEA) developed. Then called Pilot Parent Partnerships, our PTI became an ally due to its commitment to a then emerging movement called "self-determination." We discovered that the philosophy we promoted for adults with disabilities, Pilot Parents promoted for families with children with disabilities. Concurrent with the partnership established between our CIL and PTI, a new director of our Division of Developmental Disabilities was hired from another state. He brought with him a plan to change the character of the Division to embrace the concepts of self- determination and inclusion. Pilot Parents, already a developmental disabilities provider, invited ABIL's executive director to join a Division of Developmental Disabilities task force. The group's task included evaluating existing service taxonomies to determine whether they adequately achieved the "self-sufficiency" embodied within their service description language. Were there other services that might increase family/consumer participation in decision making? At each meeting, ABIL's director introduced peer mentoring as a service that could be interwoven with developmental disabilities services as a means of offering role models in a "natural supports" (i.e. real world) environment. At first, blank stares were the response; clearly, this was a foreign concept to those participating in the group. Over time, however, with repeated discussion and support from the trusted PTI, the group began to understand the concept and accept its potential. The group leader, a manager within the Division, asked the CIL director to write a proposal to do such a program. Once done, however, the proposal could not be funded; it did not fit within the funding parameters of allowable developmental disabilities services. Regardless, the alliance had been formed. Trust and commitment had been established between the CIL and the Division - a major step forward. The Plan: Community Living Options The original task force disbanded. The Division of Developmental Disabilities manager, however, continued to contemplate the peer mentoring potential. He paired up with an exceptionally passionate, dedicated case manager who had an idea called "Community Living Options." They discussed the concept with other community partners: the Volunteer Center, Arizona State University School of Social Work and, of course, ABIL. Division staff believed that "drop-in" counseling and recreation centers and "foster care homes" would be the primary flavor of the project. The CIL staff, however, dreamed of consumers living in their own homes or apartments, perhaps with roommates of their choosing, and friends and family visiting regularly. ABIL staff envisioned the consumers going off to competitive, community-based jobs that paid real wages with benefits and employers who provided natural on-the-job supports. The resulting project design includes all of these options, just like real life! The Division lined up a cadre of interns to train as the first mentors. The CIL identified existing peer mentors within the CIL for the project. The CIL proposed the project to the Valley of the Sun United Way. United Way funded the project with $22,000 in start-up funds. This allowed for a half-time program coordinator. The CIL committed existing Title XX funds (Rehab Instructional Services and Counseling) for the other half of the coordinator's salary, management and support. The use of multiple funding sources for the project creates record keeping hassles but supports the project appropriately. What Services are Provided? Duties and Roles of ABIL and Division of Developmental Disabilities Staff and Interns I. Help individuals with emergency services A. Doctor appointments B. Social Security issues C. Food D. Shelter E. Budgeting intervention F. Crisis intervention G. Relocating II. Help individuals with employment opportunities A. Volunteer job placements B. Community job placements III. Help develop peer mentor relationships A. Phone pals B. Literacy program matching C. Roommate matching IV. Help individuals in community network relationships A. Coordinate social/recreational opportunities B. Coordinate transportation co-ops V. Help Developmental Disabilities Support Coordinators A. Consultation and staffing/meetings with families, community agencies, churches and civic organizations B. Participate in person centered family meetings C. Provide family and individual counseling as requested VI. Other A. Teach self-advocacy and empowerment one-on-one, in workshops or class settings The Success The Community Living Options Project started in September 1998. The results are far beyond anything we thought possible in many respects. The project dovetails with ABIL's Project With Industry (PWI) grant by referring Community Living Options consumers to the PWI to explore employment opportunities. To date, six consumers are gainfully employed in competitive, community-based jobs. Eight Arizona State University interns volunteered more than 4,400 hours of time to the project, reducing our per hour cost to $6.42! The experience with the Community Living Options project provides data for ABIL's advocacy unit to promote inclusion and self-determination in the Developmental disabilities community in general. Major dialog between the People First self- advocates, CILs statewide, the statewide independent living council (SILC), Parents/PTI, Arizona Rehab Services Administration (VR), the legislature and traditional developmental disabilities service providers is occurring, sometimes tense and confrontational, but necessary to achieve more and better options for consumers with developmental disabilities and their families. The Outcomes to Date Fifty consumers have requested roommates. We are matching consumers according to where they requested to live. Most are moving out of family homes and/or group home situations. We have four successful Peer Mentor matches and three more current requests. There are not enough Peer Mentors available, so we hope consumer-to-consumer matches are generated from roommate matches. Consumers are working on various independent living skills. Six consumers are competitively employed with the help of the PWI program. Fifteen consumers have interviewed with PWI. Two consumers have volunteer positions which may lead to paid positions. Ten consumers are signed up with the literacy program. Twelve volunteer tutors have been trained through Joni and Friends Ministries. Two consumers have completed the program. Ten consumers received computers through Joni and Friends Ministries. Eleven consumers participate in the drop-in center at Arizona Recreation Center for the Handicapped (ARCH). Twenty five consumers participate in social/recreational activities through ABIL, ARCH, YMCA, YWCA and community centers in their areas. Overall, more that 400 consumers have been contacted to participate in the Community Living Options program one way or another. Some family members have expressed interest in volunteering in the program, helping with transportation, activities, etc. A Story M.S. is a very happy young man right now. It wasn't always so. He was living with an older sister who took his money and sometimes made him sleep outside. He would hang out all night drinking and sleeping in alleys. Upon hearing about the Community Living Options program, his Support Coordinator referred him to the program, thinking it was a long shot but worth a try. He moved in with another sister and brother who agreed to work with the CLO Program Coordinator to help M.S. improve his situation. He had no identification whatsoever. He now has a Social Security card, Arizona identification card, and a new birth certificate. His brother is his payee. The brother helped M.S. open a savings account.M.S. purchased new clothes and shoes. He volunteers at a church two days a week putting food boxes together. He doesn't drink anymore. He's trying to quit smoking. He has a job at Bank One Ballpark which he loves. He developed a friendship with a co-worker who helps look out for M.S. In return, M.S. translates Spanish for his friend as well as other co-workers. His next goal is to move into his own apartment. For more information on the Community Living Options program, contact: Darrel Christenson ABIL 1229 E. Washington Phoenix, AZ 85034 (602) 256-2245 (V/TTY) (602) 254-6406 (Fax) Email: darrelc@abil.org Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. The content is the responsibility of ILRU and no official endorsement of the Department of Education should be inferred. ADA and Title III Guide An estimated 43 million Americans have a disability. Nearly 11 million are people with a cognitive impairment that can affect language, learning, memory, awareness, and decision-making. Mental retardation, traumatic brain injury, specific learning disabilities, and Alzheimer's disease are just a few examples of cognitive disabilities. The basic premise of the Americans with Disabilities Act (ADA) Title III is to ensure that places of public accommodation provide equal opportunity to all patrons by being accessible to and usable by individuals with disabilities. Most efforts to assist businesses in complying with the ADA focus on accessibility for people with sensory and physical disabilities. The ADA Title III regulations, the Title III Technical Assistance Manual, and the ADA Standards for Accessible Design provide limited information related to accessibility for individuals with cognitive disabilities. To fill the need for information and guidance on accessibility for individuals with mental retardation, the U.S. Department of Justice funded this technical assistance project of The Arc, a national organization on mental retardation. As a central part of this project, The Arc convened a forum of experts in the field of mental retardation and leaders from the business community. This panel defined many of the barriers to equal access experienced by individuals with mental retardation and developed a series of suggestions to help businesses extend the full benefits of the ADA Title III to people with mental retardation. The following is important information on the ADA Title III. It offers tips and strategies to improve the accessibility of places of public accommodation to individuals with mental retardation and other cognitive disabilities. These suggestions, while not an exhaustive list, will assist your business and other Title III covered entities in complying with the ADA. By following these suggestions you can improve your service to customers with cognitive disabilities, as well as individuals without disabilities. This also will be helpful for groups of individuals who have difficulty reading, writing, understanding, processing information, and making decisions such as: foreign visitors and other non-English speakers, people who are functionally illiterate, and older adults who may have difficulty with speed of transactions, reading, and mobility. Making your business accessible is a win-win situation. Your business learns how to accommodate people with disabilities and thus increases its customer base. In turn, individuals with disabilities, who truly desire to be part of the community, have increased opportunities to live, work, play -- and be consumers -- in their own communities.... Who is protected by the ADA? The ADA defines a person with a disability as: 1. a person with a physical or mental impairment that substantially limits one or more major life activities, such as caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, working; OR, 2. a person with a record of such an impairment; OR 3. a person who is regarded as having a disability. The ADA's definition of disability expressly includes people with mental impairments. People with mental impairments include those with any mental or psychological disorder such as mental retardation, organic brain syndrome, emotional or mental illness, or specific learning disabilities. What is mental retardation? Mental retardation is a disability that involves significantly below average intellectual functioning combined with limitations in two or more of the following skill areas: communication, caring for oneself, home-living, social skills, community use, self-direction, health and safety, leisure and work, and the use of basic reading, writing and arithmetic in everyday living. Mental retardation happens before age 18. (Mental Retardation Definition, Classification and Systems of Supports, 9th edition, American Association on Mental Retardation, Washington, D.C., 1992.) The majority of individuals with mental retardation are quite similar to other people, and their disabilities may not be readily apparent. Individuals may need to have facts or instructions repeated more than once. Information should be presented in concrete rather than abstract language. New information especially may need to be presented in different ways, i.e., say it, show it. These individuals may have difficulty dealing with new or complicated situations. Some individuals have a degree of mental retardation that may greatly affect their language, learning, memory, awareness and decision-making capabilities. Other individuals with mental retardation may have additional disabilities, such as a vision impairment, or may require the use of a wheelchair due to a mobility impairment. Note that the kind of assistance you provide to ensure accessibility to your public accommodation may be different for individuals with multiple disabilities. For example, the things you do to accommodate the needs of a customer who uses a wheelchair but has no intellectual impairment may not be adequate to meet the needs of an individual who uses a wheelchair and also has mental retardation. Individuals with multiple disabilities may be accompanied by another person as a helper. While it is always appropriate to first consult with the individual with a disability, you may need to also confer with the helper as to the kind of assistance needed. What are barriers for people with mental retardation? Barriers for people with mental retardation and other cognitive disabilities may be in any feature of the environment that requires good reading or writing skills, money skills, communicating, and making choices. For example, reading a complex menu, being rushed to order at a quick-service restaurant, or finding a desired item in a large department store may present obstacles to a person with mental retardation. Highlights of key Title III requirements In highlighting key Title III requirements, this guide uses examples of situations involving people with mental retardation whenever possible. This is done to underscore that the ADA Title III fully protects people with mental retardation and to help your public accommodation understand some of the ways in which Title III regulations may apply to individuals with mental retardation. For definitions of key terms, see below. Discriminatory eligibility criteria Public accommodations must refrain from using eligibility criteria that have the effect of discriminating against people with disabilities. If store policy requires customers to show valid driver's licenses for identification when paying for purchases by check, this would exclude some people with mental retardation who may not be able to drive. The store should instead accept a state I.D. or other valid I.D. in order to avoid this form of discrimination. If a child care center has a policy to accept only those children who are toilet trained, the center may have to modify this criterion to include children with disabilities who, because of their disability, may not as yet be toilet trained. Surcharges Public accommodations are prohibited from imposing a surcharge on an individual or class of individuals with disabilities to cover the costs of measures to provide the nondiscriminatory treatment required by the ADA. A private agency offers fitness classes and other recreational activities for a set membership fee. The agency has made changes to some of its classes so that information can be communicated as effectively to individuals with mental retardation as to all other participants. If the agency attempted to charge individuals with disabilities a higher fee than the other participants in order to cover the costs of the changes, this surcharge would be in violation of the ADA. Reasonable policy modifications Public accommodations must make reasonable modifications in policies, practices or procedures so that individuals with disabilities can have access to the public accommodation's goods, services and facilities unless making such changes would result in a fundamental alteration in the nature of the goods and services offered. A department store may need to modify a policy of only permitting one person at a time in a dressing room, if an individual with mental retardation requires assistance in dressing from a companion. The store and other businesses with public restrooms may also need to revise their policies to allow opposite sex attendants to accompany an individual with a disability to the restroom when the individual requires such assistance. If there are shared dressing rooms or restrooms, the store may want to establish a policy to help ensure privacy for all patrons. For example, a sales associate may need to stand by the dressing room or restroom door or to post a sign asking other patrons to wait momentarily while the individual with a disability and his or her attendant are using the facilities. A retail store determines it is not readily achievable to install signs that will improve accessibility and usability for individuals with mental retardation who may be unable to read. The store must still make its goods and services available, perhaps by training store personnel to provide personal assistance in locating merchandise desired by shoppers. A bank may want to develop a videotape or have its customer service representatives provide training and orientation to help a new customer learn how to use the Automated Teller Machine [e.g., access different services, keep Personal Identification Number (PIN) secure, etc.] which is a feature of the customer's checking account privileges. Auxiliary aids and services Public accommodations must provide auxiliary aids and services when necessary so that individuals with disabilities will have effective communication leading to equal access to goods and services. A public accommodation will not have to do this if it can demonstrate that providing such aids and services will result in a fundamental alteration in the nature of the public accommodation's goods and services. The public accommodation also will not have to do this if it can show that providing the aids and services would result in an undue burden. A physician may want to have a qualified social worker or other professional available to assist during an appointment with a patient with mental retardation who has difficulty communicating and understanding important medical information. A planetarium would not have to raise its lighting to enable an individual with mental retardation who is also deaf to see the sign language interpreter during the show, because raising the lighting would fundamentally alter the nature of the show. Instead, the planetarium could provide spot lighting in one particular area to enable the interpreter to be seen clearly. Barrier removal Public accommodations must remove architectural barriers and communication barriers which are structural in nature in existing facilities when it is readily achievable to do so. Priority should be given to enable individuals with disabilities to: 1. physically enter the facility; 2. have access to the areas where goods and services are made available to the public; 3. have access to the restrooms, if restrooms are provided for customers or clients; and remove any other barriers. A department store might add pictures to the signs designating different departments -- such as adding a large picture of shoes to signs in the shoe department and to directional signs showing the way to the shoe department -- to ensure effective communication with shoppers with mental retardation who may be unable to read standard signage. Restaurants that use theme labels on permanent signage designating restrooms -- such as "bucks" and "does," "hens" and "roosters," or foreign language labels -- present a structural communication barrier for individuals with mental retardation who may be unable to read or understand the concepts behind the theme names. A method of removing this barrier would be to simply add the international symbols of "man" and "woman" to the existing signs. A shopping mall determines it will be easy and relatively inexpensive to install a ramp at an entrance where there are several steps. This barrier removal enables a shopper who uses a walker due to a physical disability to enter the mall. Alternatives to barrier removal If barrier removal is not readily achievable, public accommodations must offer goods and services to individuals with disabilities through alternative methods, if such methods are readily achievable. New construction and alterations Both public accommodations and commercial facilities must ensure that all new construction of facilities designed and constructed for first occupancy after January 26, 1993, is readily accessible to and usable by individuals with disabilities. In addition, alterations that affect the usability of primary function areas in existing facilities were required as of January 26, 1992, to conform to ADA regulation. While not included as specifications in the ADA Standards for Accessible Design, the following suggestions could enable a new shopping mall to be significantly more accessible to and usable by individuals with mental retardation: Color-coded floor tiles and related design elements to designate different sections of the mall and types of stores and services. Signs using international symbols to designate the food court, retail stores, restrooms, elevator, escalator and the directional pathway to these services from mall entrances. A large question mark, the international symbol for information and assistance, clearly marking the information kiosk where shoppers may get help in finding their way through the mall. For more information on Title III, consult the regulations and Technical Assistance Manual produced by the U.S. Department of Justice. Accommodating individuals with mental retardation The following are suggestions that may help your place of public accommodation become accessible to and usable by individuals with mental retardation or other conditions that impair a person's cognitive abilities. However, the material presented cannot possibly meet all the situations your business may encounter in serving individuals with mental retardation and other disabilities. For further guidance, you should consult the ADA Title III regulations, the ADA Title III Technical Assistance Manual, and the ADA Standards for Accessible Design. The regional Disability and Business Technical Assistance Center serving your state can also provide information and guidance. General tips on communicating Treat the individual with the same respect you treat any other patron. Speak directly to the person. Don't assume an individual with mental retardation is incapable of communicating or that someone else must "interpret" for the person (National Easter Seal Society, 1991). Treat adults as adults. Don't treat an adult with mental retardation as a child. Avoid jumping to conclusions about a person's overall ability to communicate based on the way the person speaks. Some people with mental retardation have a speech or hearing impairment, but may also be able to compensate for a communication impairment (Harper, 1990). Reduce or eliminate distractions and excess noise Give the person your full attention. Use good eye contact (Harper, 1990). Take adequate time when interacting with the person; don't assume the individual doesn't understand simply because he or she may not respond quickly; individuals with mental retardation frequently understand more than they may be able to express (Baroff, 1974; Sigelman et al., 1983). Use simple, concrete language. Avoid using words that are difficult to understand. Keep sentences short (Sigelman et al., 1983). To see if the person understands, don't ask "Do you understand?" The individual may say yes even if he or she is still not sure. Do ask short, simply worded questions that begin with "who, what, where, how, when and why" (Sigelman et al., 1983; Harper, 1990). If the person misunderstands something you said, try again using different words; if you don't understand, don't pretend to; ask again. If you feel the person doesn't understand, don't assume you need to raise your voice; volume alone will not guarantee effective communication; talking loudly may even interfere. If offering a choice -- keep in mind that making choices may be difficult for the individual; the person may defer to other people to make the decision or will look to others to give cues (Harper, 1990). it is important to keep your voice even; don't "lead" the person to make a selection he/she may not intend by emphasizing one option more than the others. take adequate time to state the options before asking for the person's choice. When giving instructions or sequences of information -- break the information down into smaller steps. take your time in giving the information. don't use jargon. if possible, don't just give verbal instructions, demonstrate the steps to show the person. check for comprehension by asking the person to tell you what he/she is to do; if possible, give the person an opportunity to do the steps. Provide training to all your employees on sensitivity and on how to give effective, appropriate assistance to people with disabilities, including mental retardation (see Resources). Use simple, clear language on signs (e.g., simple typeface, large lettering, pictures to illustrate a series of steps, pictures to illustrate choices). Consider using a system of color-coding in store design to assist customers in finding various departments. Use international pictograms wherever possible, such as the question mark symbol, to indicate where a customer can obtain help, and the symbols for "men" and "women" to mark restrooms (see Resources). Definitions Auxiliary aids and services: The term "auxiliary aids and services" includes - 1. Qualified interpreters, notetakers, computer-aided transcription services, written materials, telephone handset amplifiers, assistive listening devices, assistive listening systems, telephones compatible with hearing aids, closed caption decoders, open and closed captioning, telecommunications devices for people who are deaf (TDDs), videotext displays, or other effective methods of making aurally delivered materials available to individuals with hearing impairments; 2. Qualified readers, taped texts, audio recordings, Brailled materials, large print materials, or other effective methods of making visually delivered materials available to individuals with visual impairments; 3. Acquisition or modification of equipment or devices; and, 4. Other similar services and actions (28 CFR Sec. 36.303). Barriers, architectural: Physical elements of a facility that make it difficult or impossible for a person with a disability to approach, enter or move around in a facility. Barriers include impediments such as steps and curbs, the height or position of telephones or drinking fountains or restroom fixtures, doorknobs or operating controls that are difficult to use for people with limited manual dexterity, deep pile carpeting or unpaved exterior ground surfaces, furniture, equipment or displays that make it difficult for people to move around (The ADA Title III Technical Assistance Manual, U.S. Department of Justice, III-4.4000). Barriers, structural communication: Lack of accessible signs or alarms, partitions that hamper the passage of sound waves between employees and customers, and the absence of adequate sound buffers in noisy areas (The ADA Title III Technical Assistance Manual, U.S. Department of Justice, III-4.4000). Barriers, transportation: Any obstacle that interferes with the ability of individuals with disabilities to access and use transportation services provided by a place of public accommodation e.g., a hotel shuttle service, a day care pick-up service, transport systems in places of recreation, such as those at stadiums, zoos, amusement parks (The ADA Title III Technical Assistance Manual, U.S. Department of Justice, III-4.4700). Barrier removal: A public accommodation shall remove architectural barriers in existing facilities, including communication barriers that are structural in nature, where such removal is readily achievable, i.e., easily accomplishable and able to be carried out without much difficulty or expense (28 CFR Sec. 36.304). These barriers include more than obvious impediments such as steps and curbs that prevent access by people who use wheelchairs (The ADA Title III Technical Assistance Manual, U.S. Department of Justice, III-4.4000, III-4.4100). Discriminatory criteria: Any rules, standards, qualifications or requirements that have the effect of discriminating against people with disabilities on the basis of disability (The ADA Title III Technical Assistance Manual, U.S. Department of Justice, III-4.1000, III-4.1100). Readily accessible to and usable by: Facilities can be approached, entered, and used easily and conveniently by individuals with disabilities (28 CFR Sec. 36.401 [New Construction] and Sec. 36.402 [Alterations]; The Americans with Disabilities Act Title III Technical Assistance Manual, U.S. Department of Justice, III-5.0000, III-5.1000). Readily achievable: Easily accomplishable and able to be carried out without much difficulty or expense. In determining whether an action is readily achievable, factors to be considered include: (1) the nature and cost of the action; (2) the overall financial resources of the site or sites involved, the number of employees, the effect on expenses and resources, legitimate safety requirements necessary for safe operation; (3) the geographic separateness and the administrative or fiscal relationship of the site to any parent corporation or entity; (4) if applicable, the overall financial size, resources, and location of the parent entity; (5) if applicable, the type of operation of the parent entity (28 CFR Sec. 36.104). Reasonable modifications: Changes made by a public accommodation to its policies, practices or procedures so that an individual with a disability may have access and use of the public accommodation that is equal to that of any other customer or client. (The ADA Title III Technical Assistance Manual, U.S. Department of Justice, III-4.0000, III-4.2000). Undue burden: Significant difficulty or expense. In determining whether an action would result in an undue burden, factors to consider include the same list that is used to determine "readily achievable," although "undue burden" is a higher standard. See "Readily achievable" above. (28 CFR Sec. 36.104) References American Association on Mental Retardation. (1992). Mental Retardation: Definition, Classification and Systems of Supports, 9th edition. Baroff, G.S. (1974). Mental Retardation: Nature, Cause, and Management. Washington, D.C.: Hemisphere Publishing Co. Harper, D.C. & Wadsworth, J.S. (1990). Making Contact: Communicating with Adults with Mental Retardation. Iowa City, Iowa: The University of Iowa. Meeker, D.T. & Reeddijk, P. with assistance from Elke Zimmer & Paul Singer, (1987). Symbol Signs for Recreation Related Facilities: A National System. Society of Environmental Graphic Designers. National Easter Seal Society. Awareness is the First Step Towards Change: Tips for Portraying People with Disabilities in the Media. Brochure. National Easter Seal Society. (1991). Building Bridges - Access to America's Hot New Market. Brochure. Sigelman, C.K., Schoenrock, C.J., Budd, E.C., Winer, J.L., Spanhel, C.L., Martin, P.W., Hromas, S. & Bensber, G.J. (1983). Communicating with Mentally Retarded Persons: Asking Questions and Getting Answers. Lubbock, Texas: Texas Tech Press. U.S. Department of Justice, Office of the Attorney General (Friday, July 26, 1991). The Americans with Disabilities Act of 1990, Nondiscrimination on the Basis of Disability by Public Accommodations and in Commercial Facilities. Final Rule, Federal Register Part III, 28 CFR Part 36. U.S. Department of Justice. The Americans with Disabilities Act Title III Technical Assistance Manual. This document provides general information to promote voluntary compliance with the ADA. It was prepared under a grant from the U.S. Department of Justice. While the Public Access Section of the Civil Rights Division has reviewed its contents, any opinions or interpretations in the document are those of The Arc and do not necessarily reflect the views of the Department of Justice. The ADA itself and the Department's ADA regulations should be consulted for further, more specific guidance. Access Strategies Chart ...the following information highlights obstacles faced specifically by individuals with mental retardation and suggests actions public accommodations can take in response. As mentioned in the introduction in the accompanying guide, The ADA Title III: A Guide for Making Your Business Accessible to People with Mental Retardation, these suggestions should not be viewed as an exhaustive list. Public accommodations are encouraged to develop other appropriate methods of making their goods and services accessible to and usable by people with mental retardation, and individuals with disabilities themselves can be excellent sources of new and innovative accommodations. The Access Strategies Chart uses illustrations from a variety of settings: General (applicable to a wide variety of settings) Establishments service food/drink (restaurants, bars) Places of lodging (hotels, motels) Sales or rental establishments (department stores, grocery stores, etc.) Service establishments (banks, dry cleaners, etc.) Places of recreation/places of public gatherings Although illustrations from the hospitality, retail and service sectors are used, these suggestions can be used in other settings, as well. Accommodations for child care centers are contained in All Kids Count - Child Care and the Americans with Disabilities Act (ADA), a resource manual also published by The Arc.... General Communicating verbally Suggested Solution: Refer to General Tips on communicating in the Title III Business Guide. Seeking information by phone Suggested Solution: Automated voice mail systems may present a real barrier to individuals with mental retardation because such systems require a caller to understand complex series of instructions, make rapid choices and perform a sequence of steps. Public accommodations can avoid using an automated voice mail system or have a live operator answer all calls before they are routed to appropriate voice mail. Provide operators adequate training on communicating with individuals with cognitive disabilities. Personnel avoiding customers who look or act "different." Personnel lacking skill in communicating with and assisting people with disabilities Suggested Solutions: Public accommodations can establish management philosophy committed to equal opportunity for access by people with disabilities, insist on appropriate customer service responses, and see that this philosophy is highly visible and emphasized regularly to all employees. Public accommodations can provide new employee orientation and regular in-service training for all employees on recognizing customers needing assistance, how to offer courteous, unobtrusive assistance, how to avoid over-assisting, and how to communicate effectively -- use of clear, simple language, "testing" for comprehension, trying alternate, less complicated ways to communicate..... Public accommodations can consider recruiting qualified employees with mental retardation. By having daily contact with co-workers who have mental retardation, all employees can gain sensitivity to people with disabilities and insight into improving accessibility for customers who have disabilities affecting learning, awareness, judgment. Requiring a driver's license as I.D. for setting up bank accounts, check-cashing, paying for purchases by check or showing proof of age Suggested Solution: Public accommodations must accept state I.D. card or other bonafide I.D. in place of driver's license since some individuals with disabilities may not drive. Seeking information in person Suggested Solution: Public accommodations can use the international symbol for information/assistance -- the large question mark -- on signs designating customer service desk and on name tags of employees offering assistance and can provide training to employees on communicating with individuals with cognitive disabilities. "Wayfinding" -- Finding the way from one place or area to another Suggested Solutions: Public accommodations can eliminate irregular, winding pathways from existing facilities and from designs for new facilities. Public accommodations can use clear signs at all pathway intersections, international symbols, if available, and clear, simple language on all signs. Public accommodations can use design elements -- changes in flooring or wall surface fixture and landmarks -- to distinguish between different areas. Public accommodations can use color-coding to designate different types of services or attractions and use color-code system consistently on all maps. Computing and understanding financial transactions Suggested Solution: Public accommodations can train sales personnel and cashiers to respond effectively and appropriately to shoppers who have difficulty in understanding and handling cash and other financial transactions. Finding restrooms, identifying men's and women's restrooms Suggested Solution: Public accommodations can add international symbols or "men" and "women" to all restroom signs. Finding the elevator, escalator, telephones, etc. Suggested Solution: Public accommodations can use international symbols to mark these services and the pathways leading to them. Food/Drink Establishments Locating restrooms Suggested Solution: Public accommodations can add international symbols of "men" and "women" to restroom signs. Understanding a complex, written menu Suggested Solution: Public accommodations can provide a pictorial menu, can have server read menu aloud, and could display food samples (like a dessert cart). Understanding complex verbal descriptions of menu Suggested Solution: Public accommodations can have server use simple language to name basic ingredients of menu items or describe items in comparison to more basic, well known dishes that share similar ingredients. Making choices Suggested Solution: Public accommodations can have server offer assistance by using simple language to describe menu, by using other words to describe choices, and by having patience. Making rapid decisions, as in quick-service restaurant Suggested Solution: Public accommodations can have pictorial menu at entrance, on counter, and available to take home. Public accommodations can have cashier offer assistance by describing menu items and allowing adequate time for the individual to make selections. Computing tip Suggested Solution: Public accommodations can have a tip chart printed on small cards placed on tables and on cashier desk. The chart could be printed on back of the restaurant business card and on the take-home menu. Places of Lodging Filling out registration form Suggested Solution: Public accommodations can have front desk staff offer assistance in filling out the form and explain check-in/check-out procedures. Knowing how to get help Suggested Solution: Public accommodations can have front desk staff explain to the individual how to get help immediately by stopping at the front desk or by using the phone to call the front desk. Public accommodation can have a sample phone available to demonstrate the use of the in-room phone. Locating elevators Suggested Solution: Public accommodations can clearly mark elevators with the international symbol for "elevator" (see Resources). Public accommodations can have staff offer to show the guest to the entrance and elevator most convenient to the guest's room. Locating guest room Suggested Solution: Public accommodations can offer to show the guest to his or her room and help the guest get oriented to the location of the room in relation to elevators and emergency exits. Operating magnetic card key to open guest room door Suggested Solution: Public accommodations can have staff demonstrate how to use the key and offer to help the guest operate the key. Public accommodations can provide a life-size model of card key mechanism at the front desk so its use can be demonstrated and practiced upon check-in. Using conventional key Suggested Solution: Public accommodations can develop a simple jig that can be used by a guest, if needed, to help guide the key into the keyhole. Understanding check-out and emergency procedures, room features and guest services Suggested Solutions: Public accommodations can have front desk staff explain hotel amenities, charges and policies and provide information in clear, simple language on services such as the shuttle service, shops, pool, health spa, restaurants. By accompanying the guest to his or her room, the staff can show the guest emergency exits and procedures and demonstrate the use of room features including telephone, heating/air conditioning, clock-radio, TV. An opportunity can be provided for the guest to practice using the features to assure comprehension. Staff can explain in clear, simple language the policies and fees regarding pay-for-view movies, refreshments and room services and can check the guest's comprehension by asking "who, what, where, how when" questions. Public accommodations can produce a videotape for use on the hotel information channel demonstrating use of room features, amenities and fees, hotel guest services and fees, where to get information or assistance, and emergency procedures. Clearly show the floor number of each attraction while it is being discussed. Audio-visual aid will also benefit other guests including foreign visitors. Difficulty using hotel information channel Suggested Solution: Public accommodations can simplify operating procedures and can have bellman offer to turn on TV and start hotel information tape after showing guest to room. Avoid having video system that requires the use of both the telephone and TV remote control to operate. Sales/Rental Establishments "Wayfinding" and locating desired merchandise Suggested Solutions: Public accommodations can color-code sections of the store, use color-code consistently in giving directions and in producing ad circulars, and provide a map utilizing color-code for store departments. Public accommodations can use design elements as "landmarks" to help distinguish sections of the store and aid customers in wayfinding. A color-code and certain design elements can be used to differentiate choices at transition points in the store where the customer must make a direction decision. Graphics - illustrations, pictures and international symbols - and simple, clear words can be used in signs. A representative item, a mural-sized picture or a graphic symbol of the item can be displayed overhead in each section of store to be easily visible from all areas of the store. Public accommodations can place a highly visible "courtesy desk" near store entrance and use the international symbol for information -- the large question mark -- on the signs designating the desk. Customer service employees can wear badges with the large question mark and circulate the store, actively offering assistance to any customer who appears to need assistance finding something; let shoppers know they should look for employees wearing the badge if they need assistance. Employees can avoid giving directions that depend on the customer's ability to distinguish right from left or the ability to remember directions; instead, offer to walk with customer to the location desired. Determining how much an item costs Suggested Solution: The exclusive use of international bar coding presents a real barrier to shoppers being able to know what an item costs. If possible, price all merchandise with individual labels. Public accommodations can provide large print pricing labels on shelves; use the same units of measurement for equivalent items (i.e., ounces for ounces) on shelf labels showing cost-per-unit to help shoppers do comparison shopping. Understanding ads Suggested Solution: Public accommodations can have an in-store video loop that enables individuals who can't read well to view and hear current ad specials; have video play in a specific location near entrance rather than broadcasting the audio throughout the store. The video can use simple language and can include open captioning to aid individuals with hearing impairments as well. Finding desired merchandise when changes in displays and locations of merchandise are constantly taking place Suggested Solution: Public accommodations can keep staples in the same location and preferably near the entrance of the store. Making choices from the large selection of merchandise Suggested Solution: Public accommodations can see that adequate customer service personnel are on hand to assist shoppers. See General Tips on Communicating in Title III Business Guide for helpful advice on offering choices. Service Establishments Example: Bank or other financial institution Understanding information on products and services offered Suggested Solution: Public accommodations can simplify language in printed and verbal descriptions and can use pictures an diagrams to explain concepts, products and services. Understanding the concepts involved in setting up and managing an account Suggested Solutions: Public accommodations can produce cue cards of sequential steps needed for transactions in order to assist customer in learning how to handle account successfully (e.g., pictures of each step required to make a deposit or to cash a check). Public accommodations can develop a video describing and demonstrating basic banking procedures and products. Simple language can be used and specific actions and procedures demonstrated; open captioning can aid individuals with hearing impairments as well. Public accommodations can have a customer service representative orient customer in use of new account. The representative can use simple language and model actions such as writing a check, preparing a deposit. Opportunity can be given for the customer to practice doing the procedure. The customer service representative can be available to assist customer with monthly reconciliation. Being required to have another adult present when a new account is opened Suggested Solution: Public accommodations can conduct in-service training for all bank personnel regarding the fact that adults with mental retardation care to be treated as any other customer, unless it comes to the bank's attention that the person has a legal guardian. Using ATM (Automated Teller Machine) Suggested Solution: Public accommodations can orient the customer to the use of the ATM. A real ATM can be used by a customer service representative to model the steps to complete a transaction, emphasizing security factors related to use of the PIN (personal identification number). An opportunity can be provided for the customer to learn by doing a transaction, and the public accommodation can provide the customer with cue cards of each menu screen in the order of appearance as a prompt when using the ATM. Places of Recreation/Public Gathering Finding the way from the entrance to attractions, seating areas, concession stands, restrooms Suggested Solutions: Public accommodations can use tips regarding "wayfinding" listed under General category. Public accommodations can designate employees to circulate on pathways to provide assistance as needed, and employees can wear the large question mark symbol on their badges to aid individuals with disabilities in recognizing them as helpers. Public accommodations can provide several large areas suitable for meeting other members of one's party and can designate a different color code and a notable design landmark for each of these areas to aid in recognition. This document provides general information to promote voluntary compliance with the ADA. It was prepared under a grant from the U.S. Department of Justice. While the Public Access Section of the Civil Rights Division has reviewed its contents, any opinions or interpretations in the document are those of The Arc and do not necessarily reflect the views of the Department of Justice. The ADA itself and the Department's ADA regulations should be consulted for further, more specific guidance. Reprinted from The Arc's website: http://thearc.org/ada/adachartl.html with permission of The Arc National Headquarters 1010 Wayne Avenue Silver Spring, Maryland 20910 (301) 565-3842 The following article published in the Journal of Applied Rehabilitation Counseling, Vol. 24, #1, Spring 1993, was written for Vocational Rehabilitation Counselors. Although it is framed in clinical language, it contains numerous tips and strategies which are useful within the independent living setting for working with individuals with Traumatic Brain Injury. The article is reprinted here with permission from the National Rehabilitation Counseling Association. Counseling Strategies to Enhance the Vocational Rehabilitation of Persons After Traumatic Brain Injury By Michelle Marme', Ken Skord After traumatic brain injuries (TBI), individuals must overcome many barriers to attain their maximum independence. In our society, competitive work remains a major indicator of this independence. The model presented in this article stresses that vocational rehabilitation counseling, regardless of the client's particular situation, follows the same basic goals and methods. Those goals are directed toward the attainment of a realistic vocational plan given the individual's skills, abilities and temperaments, as well as the vocational alternatives available to that individual. To achieve those goals, the vocational rehabilitation counselor (VRC) must rely on fundamental counseling skills. A safe, therapeutic environment must be created by carefully listening to the client's ideas and feelings. The VRC assists the client inn identifying goals, as well as the behaviors necessary for achieving them. Cooperatively, strategies for defining and achieving both are explored. When inevitable differences surface between the client's perception of the best course of action and that of the VRC, VRCs must provide clear, honest explanations of their reservations about the client's plans, while remaining supportive of the client's motivation to work. Greater responsibility and skill for the counseling relationship must be assumed by the VRC in working with individuals who have had traumatic brain injuries. One generally accepted measure of adult independence in our society is competitive work. For all, work provides far more than financial gains. Work environments shape how we perceive ourselves, the hours we keep, with whom and how we socialize and what we do with our non-work time. For the person who has experienced a traumatic brain injury (TBI), work remains a significant measure of adult competence. In both medical and vocational rehabilitation counseling literature, the need for vocational counseling with individuals after head injury is well documented (Bolger, 1986; Fraser, McMahon & Vogenthaler, 1998; Vogenthaler, 1987). However, after acknowledging this need, these articles then address such issues as behavioral management techniques, counseling the family and working with teachers or employers rather than expanding upon the process of counseling the individual directly. Few resources were identified which specifically addressed vocational counseling considerations, treatment issues and techniques for counseling people who have sustained a serious TBI. (The interested reader is directed to Cicerone (1989), Prigtano (1989) and Rosen (1986) for presentations on these other issues.) Due to significant deficits in physical, cognitive and psychological domains after TBI, these individuals need more than job leads to get and keep jobs. Various writers have underscored the necessity of the individual's acceptance of and adjustment to these life long deficits as being key to eventual success in the workplace (Ben-Yishay, Silver, Piasetsky, & Rattok, 1987; Vander Kolk, 1991). Regrettably, provision of supportive counseling and vocational assistance often are regarded as separate and sequential services. Those individuals considered to possess the expertise to facilitate adjustment through a therapeutic relationship, psychologists and social workers for example, generally are not responsible for job placement and retention. Meanwhile, vocational rehabilitation counselors (VRCs) are considered responsible for job placement and retention and, yet, are not expected by their colleagues to be able to provide therapeutic assistance. Indeed, some VRCs may not feel adequately prepared to perf0rm this function. The authors believe that successful return to work after TBI is enhanced by the assistance of VRCs who are prepared to assist individuals with vocational planning, within the context of a therapeutic counseling relationship. The point at which the individual becomes involved in the vocational rehabilitation process may have significant implications for the issues which the individual may present. After injury, many person with TBI become involved in intensive rehabilitation programs which are oriented toward increasing their awareness and adjustment to disability, while attending to the remediation of physical deficits. However, progress in these areas may be very slow and limited. Discharge from such comprehensive programs may precede sufficient recovery to be ready to return to work or even for participation in the traditional community-based rehabilitation programs which are available. At times, there may be insufficient financial resources available to either initiate or continue participation in appropriate treatment programs. For many individuals with TBI, referral for vocational services comes about only after they have been unsuccessful in their attempts to return to work on their own. Recognition of the problems which develop as a result of these experiences must be integrated into the rehabilitation program as well. Therefore, this article will present an overview of the vocational counseling process, as well as the special application of the process for the vocational rehabilitation counselor. It will then identify how these processes may be applied to assisting persons with TBI. Finally, it will provide various techniques for strengthening the counseling relationship and resolving these vocational counseling issues. The Vocational Counseling Process When considering involvement in the vocational counseling process, people frequently assume either of two positions: that "there's nothing to getting a job" or that "the vocational counselor will get me a job." In the former situation the individual may not understand that special help or training is necessary in order to become employed. They will expect to "fall into"a high paying job with good benefits, ample vacations, etc. In the latter situation, little effort on the client's part will seem necessary since the vocational counselor will be expected to make all the arrangements. Given either situation, the client assumes a passive role, relying on someone or something to "make things happen." Consequently, the vocational counselor generally faces a special challenge in facilitating the client's assumption of responsibility in the process of the job search and job performance. The goal of vocational counseling is to facilitate the selection and attainment of a job that is consistent with the client's abilities and interests. In general, vocational counseling has four objectives: (1) to assist the individual in developing an accurate self-knowledge; (2) to assist the individual in the identification of the variety of vocational alternatives available to that individual; (3) to facilitate the realistic consideration of and selection from those alternatives; and (4) to prepare the individual to make career changes or adjustments as independently as possible in the future (Dawis & Lofquist, 1984). In this process, the vocational counselor helps individuals critically assess their skills, limitations, interests, temperaments, and values as they relate to work. Then, they help individuals identify those areas of work which complement these characteristics. Client/counselor cooperation is essential to the success of this process. The probability of program success may be enhanced by including those individuals who are involved directly in the client's life on a day to day basis. Counseling is the fundamental component of this process. Regardless of the population being served, this aspect of the process is neglected too frequently. Counseling within this context involves providing the client with an emotionally safe environment for coming to terms with his or her situation, for exploring the implications of that situation, for identifying problems and considering various approaches to dealing with them. Additionally, the counseling process must provide an opportunity for developing and selecting a plan of action. Strategies for assessing the success of the plan must be identified as well. Within a supportive, affectively-oriented counseling relationship, the individual can develop an awareness and acceptance of skills and limitations and, ultimately, a more integrated self-image. Additionally, an environment can be created in which the client may be comfortable in addressing the emotional responses which inevitably surface in the course of unemployment, vocational planning and the job search process, e.g. un- certainty, insecurity and frustration. In such situations, clients are more likely to admit to and work through resistance, defenses and anger. The vocational counselor also is available to educate the client about the process of selecting, securing and retaining employment. Vocational Rehabilitation Counseling Process Vocational rehabilitation counseling for persons with disabilities may be considered an extension of the basic process described above. In addition to the concerns and tech- niques outlined, it involves helping the client acknowledge the presence of the disability, especially the functional implications of the disability. The VRC also seeks to identify ways for the individual to remediate or adjust to the handicapping effects of the disability. The essential belief underlying the vocational rehabilitation counseling process is that work, or involvement in meaningful activities, is the goal and primary indicator of an individual's rehabilitation. Generally, work is accepted as providing the individual with economic self-sufficiency, as well as social and personal gratifications. The VRC must be aware that an individual's success at work is often related to his or her functional adjustment at home and in the community. Therefore, the individual's psychological, social, cognitive and physical functioning within all of these settings, i.e., home, community, and work, must be considered when developing a vocational plan. For example, self-care skills, accessible housing and transportation, emotional adjustment, social skills and supportive relationships may all affect job retention. The effect of drug and alcohol use on the individual's rehabilitation potential must be considered also. Consequently, the VRC's attention must be directed toward structuring activities which will facilitate the individual's efforts towards adjustment and independence in all of these areas. Skill development at home, in the community and at work must be considered as interrelated rather than sequential to enhance the viability of job retention. The Vocational Rehabilitation Counseling Process with People After Traumatic Brain Injury The application of the vocational rehabilitation counseling process to people with TBI presents an exciting challenge for practitioners. Specific challenges include: (a) the enhanced need for creativity and flexibility of approaches; (b) the increased intensity and duration of time required for achieving both short term and long term goals; and (c) the increased need for providing structure, consistency, support and action oriented approaches to facilitate client change. The personal and professional challenges to the VRC are many. These challenges include effectively handling the uncertainty associated with assisting individuals who may be very slow; whose anger at their disabilities and their environments may be directed toward their VRCs and whose recovery may be modest despite years of re- habilitation. Goal-oriented VRCs may become frustrated because individuals with TBI may not be able to benefit from any existing programs in the community nor have the financial support to participate in appropriate, but prohibitively expensive, programs. After TBI, a person's performance may be affected by a variety of factors: physical or mental fatigue, overstimulation from environmental factors, emotional stress or physical illness (Swiercinskey, Price & Leaf, 987). The client may appear to be losing skills that the VRC is certain had been mastered or may appear not to be trying. The VRC may find this situation confusing and frustrating. At times, this frustration may mask the VRC's vision of the client's potential because skills are being overshadowed by the deficits. It is essential that VRCs make special efforts to manage the stresses associated with this work by discovering ways to maintain a pro-active, positive investment in the counseling relationship with their clients. Counseling Strategies and Methods for Persons with TBI. The remainder of this article will offer specific counseling and case management strategies for helping persons with TBI who are engaged in the vocational rehabilitation counseling process. Involve the client The challenge of the VRC is to involve the client as actively as possible in the definition of the rehabilitation plan and in its execution. This may be initiated from the start of the vocational counseling relationship by using real life situations as cooperative problem solving activities. Together, the VRC and the client identify the steps involved in successfully completing such activities. From the start, this process may be used to underscore both the relevance of these activities to working, as well as the client's responsibility to participate as actively as possible in the completion of these tasks. By writing down the steps involved and introducing the idea that there needs to be a person responsible for each of these steps, the conditions are set for less ego threatening discussions in the future. Both in the creation of the plan and in the review of its success, an examination of the client's skills and deficits, as well as the resources available in his/her support system to help compensate for activity related deficits, is possible. The steps should be ar- ranged in chronological sequence and written down for both the VRC and the client. The incidental benefits to such an approach are that the client learns how to break down a task into its component parts, assess which components will warrant assistance from others and have a written plan on paper that can be modified should problems arise. To illustrate, consider the following goal: the client will be on time for appointments and have necessary materials with him/her. Certainly, this goal would be of benefit to both the VRC and client. The client is helped to assume as active a role as possible in carrying out the activity, while gently testing the limits of the client's independence and self-awareness. Such activities may be broken down into concrete steps to be carried out in a specific sequence: record all appointments in the same place and review on a daily basis the appointments for that day as well as the next day; choose clothes appropriate for the appointment, make sure that those clothes are ready to wear; check the weather and decide if additional clothing is necessary due to weather conditions; assemble necessary materials such as directions to and phone number of the place you are traveling to, tokens or change for bus, glasses or other assistive devices, additional money for food or emergency in a briefcase or backpack; set alarm the night before to allow sufficient time to shower, dress, eat and travel to appointment on time; pre-plan specific time to leave home which will permit timely arrival to appointment, allowing for extra delays. It is important to help the client understand that there are many steps involved in the process of getting to an appointment on time, properly dressed and with all necessary materials. It is equally important for VRCs to remember this as well. Depending upon the client's particular skills, he/she may have sole or partial responsibility for each of the steps identified. In some instances, family members may need only to be aware of this process and to oversee in a general way. In other situations, family members may need to take a more active role in facilitating specific steps. The incidental benefit of this situation is that the family may be helped also in assuming the appropriate level of assistance for their family member. The client may be engaged in both the process of reducing an activity into its component parts and identifying which parts of the process he or she can accomplish independently and which parts will warrant assistance from others. For example, initially, the plan may specify that the VRC will call the client the day before the appointment to remind the client of the appointment and to walk through the necessary activities which have been written down. As the client becomes more self-sufficient, this step may be discontinued. If, after initially discontinuing this call ahead reminder, it becomes apparent that the client cannot handle the pre-planning without the VRC calling and verbally rehearsing this plan the day before the appointment, this step would be re-introduced to the client's program. The client can be helped to keep the focus on the goal of attending appointments on time without regarding this action as backsliding or punishment. Additionally, the client and the VRC may consider objective criteria for assessing the client's success with specific aspects of the process and in the activity overall. Establish Effective Communication Improving communication between the client and the counselor may increase the chances of a successful outcome in any vocational rehabilitation counseling relationship. This may be especially important in working with individuals who have had TBIs. People after TBI frequently experience deficits in verbal and visual processing, deficits in attention, concentration, impulse control, initiation, planning and affect, including depression. Subsequently, the person who has memory problems, for example, may become suspicious of others and their motives when information is presented too quickly or without anchor points to help reinforce connections between what is currently being discussed and what may have been discussed previously and, now, not remembered. The following techniques may enhance communication with clients presenting such communication obstacles. 1. Talk with the client, rather than at the client or about the client. Carefully attend to the client's nonverbal communications, as well as the verbal statements. Provide assistance to the client in clarifying his or her thoughts and feelings about the issues raised. Ask clear, focused questions. Use closed rather than open-ended questions or provide the client with two options from which to choose. Ask only one question at a time. 2. Adjust your counseling style to compliment the client's perspective. For example, if the client appears to deal with emotionally charged situations from a factual rather than a feeling perspective, begin by matching the client's fact-oriented language in your responses. Gradually, help the client to identify the feelings associated with those thoughts and facts so that the underlying feelings may become better understood. Paraphrase the client's statements to ensure that both you and the client have a clear understanding of the thoughts being expressed. Be sure to allow the client sufficient time to process the information provided and to formulate a response. Check out the accuracy of your paraphrase and, again, allow sufficient time for the client to process and respond. Slowed mental processing is a common sequelae of TBI. Using neuropsychological data, identify the most useful sensory modality for communicating. Tactile and kinesthetic presentation of information may also be helpful. Also, speak at a level appropriate to the person's cognitive skills, being careful not to express concepts to the individual in terms that are either overly simplistic or complex. Avoid using colloquialisms, such as "raining cats and dogs," since the client may respond to the most literal meaning of such expressions and not understand your intent. 3. Depending upon the individual's residual skills, information may need to be presented to the client in more usable "chunks" and with greater repetition. Repetition is a major compensatory strategy for memory deficits. Use of appropriate cues may help strengthen the communication. Frequently, it is helpful to present information slowly, in relatively short units, providing information both auditorily and visually. If the client has strong visual processing capacity, the VRC may choose to draw diagrams to illustrate what is being discussed. Additionally, these diagrams may be helpful to the client between sessions interviewing what had been discussed. 4. Careful modulation of the VRC voice volume and speed may be helpful in shaping the rate and quality of the client's speech. This also helps to slow down the speed with which clients are providing information and may help clients in more calmly assessing the accuracy with which they are expressing their thoughts. 5. Encourage the client's use of journals to record significant information from conversations and meetings and list activities which need to be accom- plished. Calendars or datebooks are useful for recording appointments. The VRC may need to check these entries periodically to ensure that the notation may be meaningful to the client at a later date. Upon inspections, the VRC may find that a time was recorded for a future meeting, without any indication of who, what or where the client should be at that time. Provide verbal and/written summaries of what was discussed and agreed upon in the course of a session. These may be appropriate entries to the client's journal. 6. The utility of any memory aid will depend upon the client's remembering to look at these resources. This may be accomplished by helping to establish intervals at which the client will refer to these, e.g., before every meal the client will review the calendar to identify appointments for the next interval of time. Until these behaviors become automatic, the support of family members is essential for the success of these prosthetic memory aids. 7. Provide structure to the interview, to planning and to follow up: start the meeting when it is scheduled to start; state your expectations clearly; provide a limited field of choices for consideration for any one meeting; at the close of the meeting, summarize what has been discussed during the session, what decisions were made and what activities are to take place prior to the next meeting. 8. Approach planning and activities from a proactive stance, capitalizing on the person's strengths and working on other issues from this skill base. Provide feedback in a positive, supportive and constructive manner (Ivey, 1988). 9. Limit the distractions and intrusions during the counseling session by not accepting telephone calls and posting a DO NOT DISTURB sign on your door. Additionally, it may be helpful to minimize the environmental stimulus from desks piled with mail, papers and files. A clean desk, with as little clutter as possible, may help the client to focus attention on the issues raised and the activities presented. 10. Schedule the client for shorter more frequent sessions in order to reduce the amount of information covered in one session. Specific Counseling Issues Although the following represents only a partial listing of the many situations which may occur for people after TBI, they are common roadblocks to successful outcomes. Several excellent resources exist which address ways to handle specific behavioral problems demonstrated by the client who has had TBI. Among those available, the reader may find Rosenthal & Muir (1983) and Olson & Henig (1984) to be particularly useful resources for more information in these areas. Anger. If the client is angry or frustrated at the time of a particular session, wait until the client is calmer to present information which is potentially threatening or uncomfortable for the client to hear. Present such information between two potentially reinforcing statements (see Prigtano's (1989) sandwich technique). The following example may help to illustrate this point. After the VRC reviewed the results of John's recent testing, she explained that she could not support John's plans to attend college. Upon hearing this, John blew up and stormed out of the office. When John returned to the program later that day, he agreed to meet with the VRC briefly. In the privacy of the VRC's office the VRC began by saying "John, you are a caring and able person. You have demonstrated that you have a great deal to offer. At this time, I cannot support your goal of going to college. I do believe that there are many jobs and training programs where you could be successful and happy. I would like to work with you to find that success and happiness." Depression. If clients are depressed, help them refocus to a "here and now" perspective and examine what choices or actions they can make to effect some immediate changes, even if they are small changes, in their present situation. The step- wise nature of cognitive-behavioral therapy strategies for examining and evaluating life situations may be very useful with these individuals. For instance, Tom consistently expressed feelings of hopelessness about his life and his future. The frequent focus of these expressions of despair involved his concern that his disability check was issued in his mother's name. He had no say as to how the money would be spent and had to ask his mother for money whenever he wanted to buy things. He concluded that getting a job would be futile if all the money he earned would go directly to his mother and he would have to continue to get her permission to spend his own money. The VRC asked Tom to come up with some ideas about how he might be able to gain more control over his money. With cues from the VRC, they considered the question together and generated the following list: write down how much I spend each day and what I spend it on; make a list of what my living expenses are each month; make a daily/weekly/monthly budget; make a commitment to live within these budgets; agree to a money management evaluation and/or overseer; ask my physician to attest to my money management competence; meet with my parents to express my concerns and my plan for change; open a bank account in my own name. The result of this exercise was that a money management goal ladder was defined, with the last step being Tom's independent control of his own funds. The first step of the ladder, accomplished that day in the VRC's office, was to establish a workable plan and timetable for resolving a seemingly unmanageable problem. Tom reported feeling better at the end of that session. Increasing Awareness of Deficits. The authors have found, through experience, that clients who are lacking awareness of deficits are unlikely to succeed at or even attempt jobs that are inconsistent with their pre-injury skills, experiences or self-concepts. Vander Kolk (1991) advises VRCs to delay services until significant psychological acceptance occurs. The authors have found, however, that participation in the vocational rehabilitation counseling process (including counseling, assessment, job tryouts and placements) actually may foster the individual's increased awareness and adjustment to disability. Although successful job placement may not be an immediate goal of early intervention, from experience it appears that early and on-going contact with the individual while the individual is developing a sense of who he/she is and what he/she can do can be very important to the relationship with the VRC and ultimate planning with the individual. The VRC can provide assistance in the client's exploration of reasonable options and provide support when some attempts do not work out as the client might have expected. Overestimation of Client Skills. Clients, and frequently others involved in the client's rehabilitation, tend to overestimate the client's abilities to function in the work world and to underestimate the time and effort required to achieve vocational goals. The VRC will be well served to accept this as a likely, rather than a surprising, response. Consequently, the voice of (unwelcome) reality often emanates from the VRC. This information, of course, may be discounted for various reasons: the VRC does not care enough or know enough about the client's situation for example. Whether the client and his/her support system underestimates or overestimates the client's capabilities, the situation is not facilitative to the determination and acceptance of realistic vocational goals. Unrealistic expectations are considered to be part of the adjustment process for the individual and, therefore, may serve a purpose for the individual. The VRC should not minimize, discount or dismiss the client's rejection of the "reality" being presented. Instead, for example, when working with the client who insists on returning to his former position as a mason, the VRC should provide the client with a job trial to assist the client's attempt at the job, as well as to provide concrete experience to help the client judge the viability of this option for him-/herself. If the effort fails, the client is more likely to admit limitations if the VRC was an ally in the effort. The VRC's support of the client's attempt, despite clearly stated reservations, may be regarded as facilitative of a "planned failure." The client may need to see that activity through in order to be able to reassess what is reasonable and accept the VRC's recommendations in the future. Judgement/Problem Solving. Statistics suggest that many individuals who are involved in accidents which result in TBI are likely to have engaged in high-risk activities as a matter of course prior to injury and, therefore, may not have developed effective problem solving or decision making strategies prior to injury. For these people, one of the goals of the vocational rehabilitation process may be to assist individuals in developing more efficient coping styles than were utilized prior to injury. Consequently, the client's pre-injury problem-solving and decision making skills should be assessed so that the VRC can determine whether the focus should be directed toward relearning or modifying pre-injury strategies or whether the focus should also include providing a foundation for such strategies if one did not exist previously. The authors have used and found effective the following strategy. Cue and reinforce awareness and acceptance of a problem. Cue and reinforce developing possible solutions to the problem. Cue and reinforce evaluating and choosing the BEST solution and evaluate the results. Try again, if not successful. When using this strategy, the VRC should provide the client with a feedback loop involving highly structured activities with pre-established, objective, performance criteria. Through this process, the individual is presented with a series of target behaviors and observable criteria to measure success. Consider the following example. Robin received a disciplinary warning from her employer cautioning that, due to her repeated absences and tardiness in the past 6 weeks, she would be suspended if she missed work again. When asked about this situation, she told her counselor that when she goes out with her friends, she usually oversleeps the next morning. She stated that she wanted help in figuring out what she could do to prevent losing her job. The VRC suggested that they consider what happens prior to these evenings with her friends. Together, they developed the following list: she feels bored after work, decides to call her friends and they ask her to meet them at their favorite bar, they have drinks waiting for her when she joins them, everyone is drinking and having a good time, she loses track of time, keeps drinking, does not go home in time to get a full night's rest. When she wakes up late, sometimes she will try to get to work even though she will not be on time and, often, decides just to stay home the rest of the day. Further discussion revealed that this was her only form of recreational activity and that this sequence happens almost every night. When asked directly, she stated that she had been in several alcohol treatment programs prior to injury. Robin and the VRC then developed a list of alternative behaviors to visiting with her friends in bars and drinking. With cues from the VRC, they developed the following list of alternatives: limit drinking to one work night a week, joining an alcohol treatment program or, for one evening, exercise at a community fitness center near her home. She agreed to call during her break time the morning after exercising to discuss how she felt and what she thought of this alternative. Although she was not willing to give up spending time with her friends at bars, she stated that she would begin exercising three evenings each week. Increasing Appropriateness of Social Interactions. Common problems for persons after TBI may include inaccurate and incomplete perception of the social environment and difficulty inhibiting impulsive or inappropriate interpersonal responses. Such behavior may easily interfere with acceptance by employers and co-workers. Behavioral and psychoeducational approaches appear to be facilitative of the vocational rehabilitation counseling process with clients after TBI. Combinations of the strategies embodied in these approaches are necessary to effect the kinds of learning and behavior changes necessary for achieving a satisfactory vocational placement for both the individual and the work environment. As indicated previously, the process will be facilitated by the development of a trusting, supportive relationship with the client. In general, the VRC may consider the following techniques. Help the client learn which behaviors are appropriate and which are not by providing immediate, specific feedback as to the specific behavior observed and its acceptability or non-acceptability. If the behavior was not appropriate for the situation, identify a more appropriate behavior and, if possible, demonstrate the alternative and provide the client with the opportunity to practice it immediately: rehearse, repeat, perfect. Whether it is desirable to explain at that time why the behavior was not appropriate will depend upon the client's ability to benefit from such information at the time and the specifics of the situation. Also, be sure to reinforce appropriate behaviors and progress; again, identify the specific behavior as close in time to its occurrence as possible and acknowledge it. Intermittently, it is helpful also to acknowledge the client's efforts and your awareness that change is difficult. Supportive, Skill Building Groups. The client's acquisition of skills may be facilitated also by addressing these concerns within the context of a group situation. By working with other individuals whose skills and abilities have been variously affected by a TBI, the clients may be able to learn to identify behaviors in others that they cannot appreciate in themselves. As in individualized sessions, the VRC may serve as a role model while providing structure and direction to the group. Accurate feedback from peers, positive or negative, can have greater value than the best intervention from a professional. Repetition of the desired behaviors is thought to be helpful in over- learning certain behavioral responses. The work of Braunling, McMorrow, Lloyd & Fralish (1986) suggests that social skills training within a group setting, for example, does not generalize to behavior outside the group. As is characteristic of any group interaction, each individual may learn from the struggles and mistakes, as well as the successes, of other group members. Additionally, the group affords individuals the added advantage of relieving the social isolation which frequently occurs for these individuals. Summary and Conclusions Most literature reviewed in preparation for this article made reference to the need for vocational counseling to assist the individual who has had a traumatic brain injury. However, after stating this as an essential part of the rehabilitation process, most of the article reviewed then uniformly addressed more tangential issues such as counseling the family members or various ways to "manage the patient." The reader is urged to make the client as active a participant in the process of vocational rehabilitation counseling as is possible in order to optimize the client's potential for success. The model presented in this article stresses that vocational rehabilitation counseling, regardless of the client's particular situation, follows the same basic goals and methods. Those goals are directed toward the attainment of a realistic vocational plan given the individual's skills, abilities and temperaments, as well as the vocational alternatives available to that individual. Primary to the process, the VRC must rely on fundamental counseling skills: providing a safe environment for the client, carefully listening to the client and helping the client to identify goals and behaviors to change and strategies for achieving both, then designing and implementing a behavioral change program to affect these goals. The VRC must assume greater responsibility and skill for the counseling relationship, for deliberate and careful case management and advocacy, including job placement assistance. If a VRC is working within a system which will not tolerate the flexibility demanded to assist these individuals, then the VRC must investigate other services available to the individual and ensure that the client is provided with the best assistance available. Meeting the needs of individuals who have sustained TBIs demands that VRCs stretch the limits of systems presently in place. VRCs must approach this process as creatively and proactively as possible. References Ben-Yishay, Y., Silver, S.M., Piasetsky, E., & Rattok, J. (1987). Relationship between employability and vocational outcome after intensive holistic cognitive rehabilitation. Journal of Head Trauma Rehabilitation, 2 (1), 35-48. Bolger, J. (1986). Educational and vocational deficits. In M. Rosenthal, E.R. Griffith, M.R. Bond, and J.D. Miller (Eds.), Rehabilitation of the head injured adult. Philadelphia: F.A. Davis Co. Braunling-McMorrow, D., Lloyd, K., & Fralish, K. (1986). Teaching Social Skills to head injured adults. Journal of Rehabilitation, 52, 39-44. Cicerone, K. (1989). Psychotherapeutic interventions with traumatically brain injured patients. Rehabilitation Psychology, 34 (2), 105-114. Dawis, R., & Lofquist, L. (1984). A psychological theory of work adjustment. Minneapolis: University of Minnesota Press. Fraser, R., McMahon, B., & Vogenthaler, D. (1988). Vocational rehabilitation counseling with head injured persons. In S.E. Rubin & R.T. Roessler (Eds.), Foundation of vocational rehabilitation process (3rd ed.) (pp.217-242). Austin, TX: PRO-ED. Ivey, A. (1988). Intentional interviewing and counseling. Pacific Grove, CA: Brooks/Cole Publishing Company. Mandel, S. (1989). Minor head injury may not be 'minor.' Postgraduate Medicine, 85 (6), 213-225. Olson, D. & Henig, E. (1983). A manual of behavior management strategies for traumatically brain injured adults. Chicago: Rehabilitation Institute of Chicago. Pritigano, G. (1988). Brining it up in milieu: toward effective traumatic brain injury rehabilitation interaction. Rehabilitation Psychology, 2, 1135-44. Rosen, M. (1986). Denial and the head trauma client: A developmental formulation and treatment plan. Cognitive Rehabilitation, Nov/Dec, 20-22. Rosenthal, M. & Muir, C. (1983). Methods of family intervention. In M. Rosenthal, E.R. Griffith, M.R. Bond, and J.D. Miller (eds.), Rehabilitation of the head injured adult. Philadelphia: F.A> Davis Co. Swiecinskey, D., Price, T., & Leaf, L. (1987). Traumatic had injury: Cause, consequence and challenge. Shawnee Mission, KS: Kansas Head Injury Association. Vander Kolk, C.J. (1991). Persons with traumatic head-injury and job placement. Journal of Job Placement, 7 (2) 15-18. Vogenthaler, D. (1987). Rehabilitation after closed head injury: A primer. Journal of Rehabilitation, Fall, 15-21. Michelle Marme', Ph.D., CRC, is an assistant professor of Rehabilitation Counseling, Rehabilitation Education Department, University of Illinois, Champaign, Illinois. Ken Skord, MS, CRC, is the Director of Vocational Services, STEPS Industrial Rehabilitation Program, Schwab Rehabilitation Hospital, Chicago, Illinois. The Statewide Independent Living Council of Illinois "When You Go Visiting & Invite the Company Home!" Center for Independent Living: Outreach Manual Table of Contents: 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: a) 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 underserved 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 underserved 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. Create materials which identify common issues that cut across all potential CIL consumers. 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. 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. 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. 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. RESOURCES Publications by Arc of the United States for Employment of Persons with Mental Retardation [Order from The Arc, 1010 Wayne Avenue, Silver Spring, Maryland 20910; 301-565- 3842.] The Americans with Disabilities Act and People With Mental Retardation: A Blueprint for Promoting Employment, by The Arc and Great Lakes Disability and Business Technical Assistance Center. Results of the Access ADA Employment Forum held to outline a national plan for improving employment opportunities for people with mental retardation. 1993. The Americans with Disabilities Act At Work, by The Arc. A handbook which provides specific answers to commonly-asked questions about Title I. The handbook can either accompany the video or be used as a stand-alone instructional publication. 12 pgs. Revised 1994. Video: "The Americans with Disabilities Act At Work," by The Arc. Designed for first-line supervisors in competitive employment settings. Provides information on key areas of the law and how it will affect employing people with mental retardation. 13.56 min. 1991. Everybody Wins! Tips for Supervising the Employee With Mental Retardation, by The Arc. A handbook of helpful tips for the successful orientation and training of people with mental retardation. Can be used separately or with video. 6 pgs. Revised 1993. Video: "Everybody Wins! Tips for Supervising the Employee With Mental Retardation," by The Arc. Designed for first-line supervisors in competitive employment settings. 11:33 min. 1989. The Road to Opportunity, by The Arc and Great Lakes Disability and Business Technical Assistance Center. Booklet for employers on Title I of the ADA and accommodations they can use with people who have mental retardation. 12 pgs. 1994. OTHER RESOURCES "Rehabilitation Cultural Diversity Initiative: A Regional Survey of Cultural Diversity within Centers for Independent Living," by Carl R. Flowers, Dothel Edwards, Journal of Rehabilitation, July/August/September 1996. [National Rehabilitation Association - 703-836-0850] INTERNET LINKS Access Strategies Chart - thearc.org/ada/adachart.html A Different Way of Learning: The Employee with a Learning Disability - www.myna.com/~jbrodie/ld.htm ADA Distance Learning Program - www.gldbtac.org/training/sessionarchives.htm Educational Testing Service Office of Disability Policy - Directory - www.ets.org/disability/html LD OnLine Tips for Workplace Success for the Adult Learner - www.ldonline.org/ld_indepth/adult/payne_workplacetips.html Learning Assistance Center of Xavier University - www.xu.edu/studev/learning/interesting_links.html Learning Disability Association of America - www.ldanatl.org TBI Resource Guide - www.neuroskills.com The Alliance for Technology Access (ATA) - www.ataaccess.org The Disability Link - www.accessunlimited.com The National Adult Literacy and Learning Disabilities Center (National ALLD Center) - novel.nifl.gov/nalldtop.htm