Assume Nothing! Rehabilitation Services Administration U.S. Department of Education. The Council of State Administrators of Vocational Rehabilitation

Transcription

1 Assume Nothing! A Monograph from the 38th Institute on Rehabilitation Issues To Address Underserved Populations, Including Individuals Who Are Deaf-Blind Rehabilitation Services Administration U.S. Department of Education The Council of State Administrators of Vocational Rehabilitation The University of Arkansas 2014

2 When reproducing or utilizing information provided, proper citation of the source is appreciated. Thirty-eighth Institute on Rehabilitation Issues. (2015). Assume nothing! A monograph from the 38th Institute on Rehabilitation Issues to address underserved populations, including individuals who are deaf-blind. Hot Springs, AR: University of Arkansas CURRENTS. The Institute on Rehabilitation Issues (IRI) is a project funded under grant # H264C by the U.S. Department of Education (Department). The information contained in this document does not necessarily reflect the position or policy of the Department and no official endorsement should be inferred. ii

3 Primary Study Group Dr. Bill Bauer Marietta College Vanessa Denham-Jones Kentucky Client Assistance Program Thomas Draghi Wisconsin Division of Vocational Rehabilitation Art Garza Division of Vocational Rehabilitation Washington Carri George University of Arkansas CURRENTS Brigid Griffin Nebraska VR Dan Hopkins Rocky Mountain Technical Assistance and Consulting Center Alice Hunnicutt New Jersey Division of Vocational Rehabilitation Robert Jahner TACE Region 8 Reginia Kimbrough Arkansas Rehabilitation Services Paul Leung University of North Texas Katharine Levandowsky Arizona Rehabilitation Services Administration Jeanne Miller University of Arkansas CURRENTS Corey Moore Langston University Rehabilitation Research and Training Center on Research and Capacity Building for Minority Entities Dr. Jerry Petroff The College of New Jersey Jamie Ray-Leonetti Pennsylvania Client Assistance Program Elizabeth Spiers Virginia Department for the Blind and Vision Impaired iii

4 Table of Contents Primary Study Group... iii Introduction...1 Vocational Rehabilitation Culture...6 Needs Assessment and Planning at the State Level: Find, Discover, Design, and Respond.14 The Comprehensive Statewide Needs Assessment...15 Step 1. Defining and Establishing the CSNA Goals (Finding)...17 Step 2. Developing a CSNA Plan for Information and Dissemination (Finding)...18 Step 3. Gathering the Information (Finding and Discovery)...22 Step 4. Analyzing the Results and Developing Findings...25 Step 5. Developing the Conclusions: Potential Action Strategies (Design and Response)...25 Step 6. Informing State Plan Goals, Priorities, and Strategies (Response)...26 Sample Recommendations...26 Recommendations for the Traditionally Underserved...27 Recommendations for Persons Who Are Deaf-Blind...31 Responsive Service Design at the Individual Level...35 Find, Discover, Design, and Respond...35 Find...35 Discover...36 Design and Respond...39 Additional Strategies for Engagement of Underserved Individuals...40 Conclusion...42 Bibliography...45 Page iv

5 Introduction The persistence of inequitable access to and utilization of vocational rehabilitation (VR) services for members of racial and ethnic minorities and people with low-incidence disabilities, such as deaf-blindness, is well documented. The 38th Institute on Rehabilitation Issues (IRI) Primary Study Group (PSG) on Serving Traditionally Underserved Populations and People Who Are Deaf-Blind determined early in our discussions and work together that we did not want to produce just another document that simply discussed the problem. We wanted to give professionals at all levels within the VR system practical guidance and concrete recommendations on how to begin to change the status quo for people of color with disabilities and people who are deaf-blind. Charged by the Rehabilitation Services Administration (RSA) to include both traditionally underserved and persons who are deaf-blind, we resolved to develop a document that could be used by professionals working in the VR field to improve their practice and to enhance employment outcomes, independent living, and community integration for people with disabilities. Addressing the needs of two such disparate groups as traditionally underserved populations and people who are deaf-blind in one document was a struggle for the PSG. In the end, we chose to focus on the shared needs and experiences of both groups, while recognizing that there are also significant differences, and to address the needs of both groups through the lens of cultural humility, described below. The term traditionally underserved has specific legislative meaning in the Rehabilitation Act and subsequent reauthorizations. Congress found evidence of inequitable 1

6 treatment many would say unfair and unjust treatment of ethnic groups such as African Americans, Hispanic Americans, Native Americans or American Indians, and Asian Americans within the vocational rehabilitation service system. The language traditionally underserved is included in Section 21 of the Rehabilitation Act and in Section 409 of the recently authorized Workforce Innovation and Opportunity Act (2014). In this document, the PSG uses the terms traditionally underserved and people of color interchangeably. People of color are not the only groups who have been inadequately served by our system; however, they comprise the groups identified in the legislative language. We include the term people of color to recognize that this is the preferred term of self-identification for many members of these groups. The term deaf-blind is harder to define, and the different definitions that exist create some dissonance and illustrate the fact that no group is homogeneous, that there is diversity within diversity. The Individuals with Disabilities Education Improvement Act (2004) defines deaf-blindness as a dual sensory impairment resulting from concomitant vision and hearing difficulties that cannot be accommodated in a program for children with blindness or children with deafness. In other contexts, deaf-blindness is viewed as a unique disability in itself and not just deafness plus blindness. Some people who are deaf-blind consider themselves primarily deaf, with some visual impairment. Others consider themselves primarily blind, with some hearing impairment. Some people who are deaf-blind prefer to use deafblind or deafblindness to emphasize the unique nature of their disability (McGinnity, 1995, Lagati, 1995, Wittich et al, 2013). A group of people prefer to use Deafblind or DeafBlind to show they are part of a unique culture and community. They are usually Deaf people who have lost or are losing their vision later in life. Others, who may be blind or visually impaired and losing hearing, prefer to use the term deaf-blind to show that they have a combination vision and 2

7 hearing loss (Miller, 2015). Some individuals from traditionally underserved populations are also deaf-blind, further complicating the definition. In this document, the PSG has chosen to use the term people who are deaf-blind to encompass all of these individual differences. Given our charge, the PSG believes the messages and definitions in Section 21 of the Rehabilitation Act and in Section 409 of the Workforce Innovation and Opportunity Act (WIOA) can be generalized to all underserved populations, not only traditionally underserved. The PSG realizes that many of the people we work with are marginalized in some way, in addition to having a disability. This marginalization might be in response to race, culture, class, gender, age, language, geography (rural vs. metropolitan), or sexual orientation. For example, some groups residing in poor and difficult-to-access areas of Appalachia have developed a culture that is difficult for outsiders to understand (Bauer & Growick, 2003). Vocational rehabilitation legislation, systems, and professionals may have conscious or unconscious biases that affect how we view these individuals and the assumptions we make about what they can contribute to the workforce. Although it is beyond the scope of this document to make specific recommendations for all populations that experience exclusion from or nonparticipation in our system, we believe that the approaches described can be generalized and applied to other populations, extending the definition of traditionally underserved. To this end, the PSG identified and articulated specific messages we hope readers will take from this document and the impact we would like readers to make using this information. Our values as a VR community are based on the Rehabilitation Act of 1973 and have been reinforced through subsequent amendments and reauthorizations. The concept of social justice is alive and well in the findings and purpose of the Rehabilitation Act of 1973 as amended. These values of social justice include: 3

8 Full inclusion and participation in the mainstream of society The right to pursue a meaningful career, not just work Respect for self-determination and informed choice It is our hope that VR personnel and their partners will use this document to examine their own service culture, policies, and practices and to use those discoveries to further these values and contribute to the following impacts: Full inclusion in the workforce of people with disabilities, including people of color and people who are deaf-blind Increased trust in the VR agency and process by members of traditionally underserved populations, including people of color and people who are deaf-blind The PSG recognizes that individuals are unique, are a part of many communities, play many roles, and cannot be defined by one aspect of their complex identities. Ridley (1995, as cited in Tervalon & Murray-Garcia, 1998) described the conjoint membership in eight cultural roles to demonstrate the uniqueness of a particular person as Mexican American, male, father, husband, Catholic, mechanic, night-school student, and resident of East Los Angeles (p. 121). We encourage VR professionals to take a holistic view of clients as they work with them to identify their vocational and independent living goals. In 2014, how we experience race, culture, and diversity is in flux. We are dealing with diversity within groups undergoing rapid change. Generational identity, immigrant status, and other differences create multiple perspectives within groups. We cannot underestimate the impact of global connectivity, access to the Internet, and information on the communities we hope to serve. These are fluid concepts that have impact on our understanding of groups and their culture and the strategies we use to reach and serve individuals with disabilities. 4

9 The PSG defines culture as a system of language, values, and supports that extend and distinguish a group s sense of necessary identity. Using this definition, we can address the needs of racial and ethnic minorities as well as low-incidence disability groups such as people who are deaf-blind. It is impractical, if not impossible, for one individual, much less all VR staff, to become familiar with all customs of all cultures. The PSG believes a more effective approach is cultural humility, as described by Tervalon and Murray-Garcia (1998) for the health care field. Cultural humility incorporates a lifelong commitment to self-evaluation and self-critique, to redressing the power imbalances in the patient-physician dynamic, and to developing mutually beneficial and non-paternalistic clinical and advocacy partnerships with communities on behalf of individuals and defined populations (p. 117). While it is certainly beneficial and desirable for VR personnel to become familiar with as many of the values and customs of the people they serve as possible, the goal is not to master a finite body of knowledge but to simultaneously look inward to examine one s own conscious and unconscious biases, to reach outward to build relationships with individuals and communities, and to see the client as the expert (Tervalon & Murray-Garcia, 1998). Given the PSG s commitment to cultural humility, we have adopted a mantra of zero assumptions, 100% respectful discovery. We hope that this document serves as guided discovery in your efforts to change the status quo for people of color with disabilities and people who are deaf-blind. We invite you to join us in releasing assumptions and engaging in respectful discovery. 5

10 Vocational Rehabilitation Culture Before we can begin to explore the needs of the cultures represented by those we serve, we must begin with understanding our own the culture of vocational rehabilitation (VR). If we define culture as a system of language, values, and supports that extend and distinguish a group s sense of necessary identity, what are the elements that define our identity as the VR service system? The historical values of the VR system are embedded in legislation, in both the spirit and letter of the law. The Rehabilitation Act begins with the idea that disability is a natural part of the human experience and in no way diminishes the right of individuals to (a) live independently; (b) enjoy self-determination; (c) make choices; (d) contribute to society; (e) pursue meaningful careers; and (f) enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society. (Rehabilitation Act, 1973) Congress passed the Rehabilitation Act (1973) with knowledge that individuals with disabilities have historically encountered various forms of discrimination in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and public services. Legislators and advocates noted that the goals of the nation properly include the goal of providing individuals with disabilities with the tools necessary to (a) make informed choices and decisions and (b) achieve equality of opportunity, full inclusion and integration in society, employment, independent living, and economic and social self-sufficiency. The public VR program has as its foundation the removal of discriminatory barriers and the full equality of persons with disabilities, which are basic principles of social justice. Social justice means that all persons have 6

11 equal economic, political, and social rights and opportunities. As recognized by the U.S. Congress, social justice is at the very root of rehabilitation. This foundational language, continued in WIOA, represents the spirit of the Rehabilitation Act and is intended to instruct every decision made in the execution of the mission. In spite of the emphasis on inclusion and equality, patterns of inequitable treatment of minorities have been documented in all major junctures of the vocational rehabilitation process (Rehabilitation Act, 1973). One goal of this document is to examine reasons and remedies for these historic inequities. In our discussions and explorations, it became apparent that there are multiple reasons for the current inequities. Inequity may occur because of the cultural dissonance between the culture of VR and the culture of the communities we aspire to serve. Cultural dissonance occurs when aspects of two cultures have specific points of focused conflict (often nonconscious and unintended). Frequently these conflicts occur in the dimensions of language, values, or principles of behavior (ethics). The question we must first ask ourselves is: What are the attributes of our VR service culture that may be points of dissonance or conflict with the people we wish to serve? Some of those points of dissonance may actually be aspects of the VR legislation. Other points may be the result of interpretation and longstanding practice. The state-federal VR system is part of a hierarchical bureaucracy, placed in the societal and historical context of the United States as well as the states and their culture. State VR agencies are monitored by the federal partner, the Rehabilitation Services Administration, and must meet performance standards and indicators as well as other compliance measures. The management practices of VR counselors include fiscal control of client service dollars. Power 7

12 and privilege are inherent in the system regardless of the stated, and often demonstrated, intention of social justice. The system cannot escape influences of the past as part of an America that established discriminatory practices, stereotyping, and low expectations. Milner (2007) indicated that notions of normality, where racial and cultural others are viewed as negative, may be the result of ingrained systems of knowing. Perceived differences can create the conditions whereby individuals are unsure of how to interact, perhaps due to their own lack of knowledge or insecurity. McIntosh (1989) stated, Whites are taught to think of their lives as morally neutral, normative and average, and also ideal, so that when we work to benefit others, this is seen as work which will allow them to be more like us (para. 6). As a result, those who are part of the majority often do not spend time reflecting on their own behavior and take much for granted as the norm. Myths are tales passed on that are not necessarily based on fact, while misunderstanding refers to interpretations of information or knowledge that is wrong. Many in the majority society may have had minimal contact or relationships involving racial/ethnic groups and/or persons who are deaf-blind, perhaps due in part to small numbers and social customs. This limited knowledge and exposure set the stage for the creation of myths and the potential for misunderstanding and the formation of stereotypes. Myths and misunderstandings are difficult enough to counter, but stereotypes may be even more problematic in that stereotypes have their basis partly in fact or small bits of information. Psychologists have suggested that while noticing differences is natural, judging them or not judging them can be learned (American Psychological Association, 2012). Stereotypes are formed when visible, consistent, and easily recognizable attributes are applied 8

13 generally to all members of a group with little or no regard for individual differences. Many of these biases are hidden beneath the surface but manifest themselves in other ways. Sue (2010) described how seemingly minor verbal and nonverbal slights or insults provide a glimpse of the communicator s conscious or unconscious assumptions or prejudices. Ethnic groups and people with disabilities have all been stereotyped to some extent. Many of these stereotypes have been perpetuated in the popular media. These perceptions developed over time play a role in discrimination, defined as making a distinction in favor of or against a person or thing based on the group, class, or category to which that person or thing belongs, rather than on individual merit. Greenwald and Benaji (1995) posited that it is possible that social behavior is not completely under our conscious control and argued that much of our social behavior is driven by learned stereotypes that operate automatically and therefore unconsciously when we interact with other people. As a result of perceived differences and stereotyping, racial/ethnic groups and persons with deaf-blindness have often had less than optimal success in accessing and obtaining an education and other services, such as VR. Low expectations have been found to be a primary barrier for both racial minorities (Rosenthal & Berven, 1999) and persons with deaf-blindness (U.S. Department of Health and Human Services, 2012). Rosenthal and Berven (1999) examined the effects of client race on clinical judgment of European American graduate students in rehabilitation counseling. Two groups of European American students were asked to review case materials for clients who were identical with the exception of race. For one group, the hypothetical client was reported to be European American and for the other, African American. In the African American condition, the client was judged to 9

14 have less potential for education and employment. Given that all case information was identical with the exception of race, the group differences were attributed to racial bias. Another form of low expectation occurs when students of a particular population or demographic group are overrepresented in special education programs relative to their group s presence in the overall student population as a result of inappropriate labeling (Harry & Klingner, 2006; National Education Association, 2007). In addition, an ethnicity s group perception of disability and the corresponding low expectation may contribute to nonparticipation. Yokoi (1994) found that 83% of Asian American adults with a disability in Los Angeles County live at home sheltered by their families and have not taken advantage of the services available from the state. Variables of perceived differences, stereotyping, and low expectations make these groups particularly vulnerable to discriminatory practice. Hahn (1988) pointed out that many people with disabilities believe their problems are less the result of their disability than of prejudice and discrimination. People with disabilities are victims of indignities, discrimination, and exclusion from society in much the same way as are other marginalized groups of people based on race, gender, or sexual orientation (Kanter, 2011, p. 422). Another factor hindering success by traditionally underserved populations is a lack of trust in the government and the VR agency. While many of the traumatic events that contributed to this distrust happened long ago, research indicates that the effects of trauma are not limited to those who directly experience it, but can also impact family members, close friends, caregivers, and even subsequent generations (e.g., Brave Heart, 2000; Dekel & Goldblatt, 2008). The history of broken treaties and forced removal of the American Indian and slavery of African Americans are obvious examples that continue to foster mistrust. Less within the public eye, but no less 10

15 traumatic, are the internment of Japanese Americans in camps and the institutionalization of persons who are deaf-blind. Chinese people have been legislatively excluded from immigration. Many immigrants have fled countries where authoritarian governments rule with little regard for human rights, creating an uneasy relationship between citizens and government. State VR agencies may assess the cultural humility of their leadership and staff. There are commercially available cultural audits to consider data and narrative related to minority hiring practices, employee mobility, and organization climate. There are also online selfassessments to explore hidden biases as part of a Harvard research study called Project Implicit ( In her article White Privilege: Unpacking the Invisible Knapsack, Dr. Peggy McIntosh (1989) revealed the insidious nature of privilege and nonconscious attitudes through a series of questions the reader is encouraged to answer. VR staff may wish to consider this article and its questions to assess their assumptions related to traditionally underserved groups and those who are deaf-blind. The bedrock of the VR system is the belief in economic self-sufficiency and the power of work to achieve it. Employment is a key to independence and improved quality of life for people with disabilities (Kittay, 2011). Furthermore, we value employment outcomes that are consistent with an individual s unique strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice (Rehabilitation Act of 1973, 29 U.S.C. 722(A)ii). We are committed to individualized plans, services, and outcomes. At the same time, we emphasize the importance of achieving successful outcomes to meet established standards and quantitative goals. This constitutes a dilemma for VR professionals and creates space for biases to creep in and widen the inequities. 11

16 The issue of VR agency emphasis on placing people of color and deaf-blind individuals into jobs rather than careers has serious consequences for achieving equity. While a job might offer a client a minimal wage and an opportunity to gain some transferable skills, careers often sponsor health benefits, pay higher wages, provide paid vacations, present consumers with career advancement opportunities (O Day, Killeen, & Goldberg, 2006), and allow them to achieve incomes that exceed Social Security Administration fixed incomes. The VR culture also upholds the ideal of the individual. We advocate individual decision-making, independent living, and social self-sufficiency. Our goal-setting practice with individuals encourages self-determination and informed choice. Many traditionally underserved cultures, however, value interdependence above independence. This is an example of cultural dissonance that could have a negative impact on the working alliance if VR professionals do not adopt an approach of cultural humility. Full inclusion and participation in the mainstream of society, the right to pursue a meaningful career and not just work, and respect for self-determination and informed choice are principles of social justice. None other than the father of the Americans with Disabilities Act, Justin Dart (1992), testifying before the Senate Subcommittee on Disability Policy regarding the Rehabilitation Act reauthorization, said that the Rehabilitation Act was the foundation of a new era of independence and civil rights achievement for 43 million Americans with disabilities. These goals cannot be realized without resources to help citizens with disabilities prepare for the workplace of the future. The major force for such preparation has been, and will continue to be, the State-Federal Vocational Rehabilitation Program. To fulfill the promise of the Rehabilitation Act and WIOA, for all Americans with disabilities, the VR culture must be open to recognizing dissonance created by our own system and values. We must find people who are underserved, identify their real needs, design systems and services to be responsive, and do this with zero assumptions, 100% respectful discovery. 12

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18 Needs Assessment and Planning at the State Level: Find, Discover, Design, and Respond In this chapter, we approach the challenge presented to our group by describing a way to integrate our recommendations for addressing services for traditionally underserved populations using existing deep systems tools that every agency has at hand: the Comprehensive Statewide Needs Assessment (CSNA) and the state plan. Our central recommendation for achieving higher equity is contained in four words: find, discover, design, and respond. Find: Acknowledging that the vocational rehabilitation (VR) system has evolved to its current state in the context of a larger nation with a history of discrimination that has been expressed in forms of passive and active exclusion of some traditionally underserved populations we seek to reach, our first challenge is to simply find the people we aspire to serve. Who are they? Where do they live in our service areas? What are their numbers? Discover: As previously stated, the Primary Study Group (PSG) adopted the mantra of zero assumptions, 100% respectful discovery. We use the term discover to describe the deeper look one must take to fully understand the myriad circumstances that may support or impede a service relationship with a community or culture. Discovery involves not only gathering data to find people, but asking the critical, respectful questions that open doors to not only understanding but trust. Through setting up forums around discovery questions and listening without judgment to people s stories about their own experiences, we can begin to dismantle existing impediments to service. Another important aspect of a larger strategy to reducing inequities is understanding and addressing cultural dissonances that may surface in 14

19 discovery conversations. By designing and utilizing different respectful venues of discovery, sufficient understanding can be achieved to advance to the next phase of the challenge: design. Design: Having found the people, community, or culture, and having diligently worked through appropriate and respectful venues to understand true need, it is possible to reevaluate our own system of services in terms of adaptive design. We can ask ourselves: How can we adapt our agency service delivery patterns and practices to reduce those attributes of our service design that may result in service inequity? How can we design our service delivery system to be more approachable and accessible? Respond: The response is represented by the resources and strategies the agency brings to the issue to carry out the design. Respond represents the whole of execution. The Comprehensive Statewide Needs Assessment Given our four focal concepts, the question then becomes: How can we integrate find, discover, design, and respond into our service delivery system? The state plan, as a document, is a combination of assurances to the Rehabilitative Services Administration (RSA) that the state is in compliance with the authorizing legislation (WIOA) and its regulations and a dynamic program process that generates the administrative strategy for responding to and serving the needs of predefined groups of persons with disabilities. Given this second role of the state plan, it is, when used correctly, a deep systems change tool that can be used to diminish service inequity. Underserved/unserved and minority populations are among the groups required to be included in the triannual CSNA and state plan of the VR agency. The CSNA and state plan represent perhaps the most natural existing administrative structure in terms of a streamlined opportunity for the VR agency to continuously deepen and improve its service response to the groups being 15

20 addressed in this publication. The RSA offers on its website a model VR needs assessment guide for states ( InfoUse, 2009). This extensive guide offers a very straightforward six-step process of statewide assessment designed to culminate in the revision of the state plan and strategy: 1. Defining and establishing the CSNA goals 2. Developing a CSNA plan for information and dissemination 3. Gathering the information 4. Analyzing the results and developing findings 5. Developing the conclusions: Potential action strategies 6. Informing state plan goals, priorities, and strategies (InfoUse, 2009) In developing the framework of this document, the PSG has emphasized the fluid and constantly changing nature of the communities and groups we have been challenged to address. Due to changing economic conditions, legislative action, and even climatic changes, the composition and conditions of a given community s population may alter significantly in a 3- to 6-year period. The strategy necessary for conducting needs assessments and developing appropriate service responses for traditionally underserved populations and cultures must also be refreshed regularly for the discovery process to be effective. Our recommendation to the state agency is to build the agency s focus and commitment for serving our target groups into the foundation of its CSNA process, not only for a single cycle, but as a hardwired commitment that is sustained over the course of time. We now offer suggestions for how the six steps of the model CSNA process can incorporate the critical phases of find, discover, design, and respond. 16

21 Step 1. Defining and Establishing the CSNA Goals (Finding) The first step of the CSNA model presents a natural opportunity for the VR state administration to both initiate and lock into an ongoing strategy of finding, discovery, design, and response both in the agency s CSNA and ultimately in the VR state plan response. This step of customizing CSNA goals at the outset of the planning process also serves as an opportunity to include the State Rehabilitation Council (SRC) in the process of statewide assessment and to sharpen the focus on traditionally underserved groups. SRC members may already represent these very groups. In designing the CSNA goals, it is critical to find ways to more directly involve persons who represent the cultures about which you seek to learn. Your SRC represents a natural first line of consultation. If your SRC cannot represent specific groups in your executive planning, seek the consultation of a key informant who is trusted by the culture you wish learn about and who knows the rules of hospitality for that culture. The CSNA Goals and Finding The assessment process needs to be shaped upfront by a commitment to specific goals. For the groups discussed in this document, assessment must be designed in a way to meet the unique challenges presented by what could be described as a moving, evolving, and developing target. If a VR agency is committed to assessing the needs of discernible cultures of traditionally underserved individuals, the strategy and goals of assessment need to be continuous and progressive in order to keep up with changes both natural and inherent in those cultures. We recommend that specific assessment goals be hardwired into the state agency s CSNA process. The term hardwire refers to a goal being written into the template of the first stage of the CSNA goals. This hardwiring of CSNA goals ensures that design and response to these groups continues through time for the ongoing cycles of statewide needs assessment. Given our 17

22 definition of culture and that term s relationship to minorities, traditionally underserved and hard to serve, the first-stage CSNA goals need to continuously address the need of the state VR program to find and continuously work with people with disabilities from underserved cultures and people who are deaf-blind. Step 2. Developing a CSNA Plan for Information and Dissemination (Finding) For VR administration, Steps 1 and 2 present the challenge of finding language to make the whole CSNA process comprehensible and meaningful to the diverse members of the citizen council we call the SRC. Whether you are speaking to the SRC, legislators, or even nonspecialized staff, we have found the most basic explanation of the CSNA process can be usefully reduced to describing the management of two distinct streams of information: numbers (data, quantitative) and narrative (story, qualitative). In designing your overarching plan for information gathering, the numbers and narrative as distinct information streams demand distinct treatments. Because these two distinct streams of information are so critical to the discussion of communities we are addressing, we will describe these two concepts and their relationship to the model CSNA. Gathering Quantitative Data The statistical profiles and trends generated by the numerous national and local data banks offer the skilled practitioner opportunities to discover changes in populations. The model planning guide previously referenced and developed for RSA by InfoUse (2009) offers appendices and numerous references to potential data sources that could be used in your data gathering strategy. Data frequently offer points of orientation in terms of where to start the deeper exploration of need. In Step 3, Information Gathering, we will talk about the deeper 18

23 exploration of need as narrative exploration, but the data component is necessary to find patterns that would not be discernible from the qualitative perspective. In preparing this document, the PSG compiled data regarding the traditionally underserved and persons who are deaf-blind. This compiled data became our foundational data summary, and it outlines an important set of trends. We encourage the reader to consider both the strengths and shortcomings of data as you read this summary. The numbers in this foundational data summary establish the argument for the work we are doing in this document. The data summary seems to indicate the need for a deeper look in many areas of service. As we will discuss later, the deeper look is necessary. While these numbers point us to the task, they fall considerably short of delivering actual findings or describing what is needed to remedy the trends illustrated. Foundational data summary: General data about the underserved and deaf-blind. Section 21 of the Rehabilitation Act and Section 409 of WIOA highlight the growth of racial/ethnic groups in American society that will soon, in total, become an ethnically and racially diverse majority (U.S. Census, 2011). The underserved groups defined in these Sections have increased significantly since The 2010 U.S. Census (2011) reported that Whites continue to be the largest group (223.6 million), accounting for 72% of all people living in the United States. During the same time, the Black or African American population totaled 38.9 million and accounted for 13% of the total population. Approximately 14.7 million people (about 5% of all respondents) identified their race as Asian, and 2.9 million respondents indicated they were American Indian or Alaskan Native (0.9%). The smallest major ethnic/racial group was Native Hawaiian and Other Pacific Islander (0.5 million), representing 0.2% of the total population. 19

24 Between 2000 and 2010, the Hispanic population grew by 43%, rising from 35.3 million in 2000 to 50.5 million in This rise in the Hispanic population accounted for more than half of the 27.3 million increase in the total U.S. population. In 2010, Hispanics comprised 16% of the total U.S. population of million (U.S. Census Bureau, 2011). The numbers of people who are deaf-blind are more difficult to come by, but nevertheless are relatively small within the universe of disability. The National Association of Regulatory Utility Commissions (2012) estimated that 70,000 to 100,000 people living in the United States are deaf-blind. With a population of approximately 310 million, the percentage of the American population with deaf-blindness is.0003%. In contrast, most figures place the number of persons with disabilities at about 15% of the general population. Other estimates suggest that million Americans have both a vision and a hearing loss (American Association of the Deaf- Blind, 2005). In terms of deaf-blindness and race, estimates of children/students indicate that American Indian and Alaskan Natives make up the smallest group (2%), followed by Asian and Pacific Islander (3%), Hispanic and Latino (12%), and Black (14%). White children and students represent the largest group (56%) of those reported (Killoran, 2007). Moore (2001), in a national RSA-911 data-driven study on the closure success rates for persons with hearing loss, found that racial and ethnic customers of underrepresented groups (i.e., African Americans, Native Americans, Asian Americans) were less likely to achieve closure success when compared to Whites. In discussing work with American Indians, Davis and Keemer (2002) suggested research on referrals by providers, employers, schools, unions, family members, and self-referrals to understand how these communities can be better served and better utilize available resources. Davis and Keemer (2002) mentioned how stigmas can influence 20

25 utilization rates and how understanding what contributes to these stigmas can help providers develop more effective outreach programs (p. 17). Once the underserved are accepted into the VR program, additional emphasis must be placed on retention. Research suggests that persons from underserved groups are provided with fewer resources to mitigate or overcome their lack of prior education or training opportunities (Mwachofi, 2008; Mwachofi & Hopkins, 2009; Mwachofi, Hopkins, & Thornton, 2010a, 2010b). The fact that underserved populations receive fewer education and/or training services (Moore, 2001; Mwachofi, 2008) and have fewer dollars expended on their rehabilitation (Mwachofi, 2008; Mwachofi & Hopkins, 2009) is problematic when data suggest that education and training are clearly linked to successful rehabilitation outcomes. Summary. As we have pointed out, data and narrative information often enter the CSNA process as two distinct streams of information, and the model guide discourages moving to judgment and finding until those two streams can be analyzed in relationship to one another in Step 4. Gathering data follows well-developed, tested, and more predictable tracks in a needs assessment process. That said, sometimes data indicate upstream trends early in an active CSNA process. A frequent example of upstream trends is an indication of possible underservice in certain regions and areas of a state for certain groups due to population shifts and trends or economic changes. These early numbers may even suggest the need to revise the original goals of the CSNA (Step 1) and possibly change the approach outlined in Step 2. As we move into Step 3, Information Gathering, we will discuss CSNA strategies in terms of narrative and discovery and how they must be designed with special intentionality. 21

26 Step 3. Gathering the Information (Finding and Discovery) The information-gathering phase in the CSNA includes data collection and the gathering of qualitative information, or narrative types of information. Sometimes the gathering of narrative types of information must respond to hints and suggestions from the data emerging in the upstream activities of the whole CSNA process. The methods, means, as well as execution for the collection of narrative information together comprise what we have called the deeper look. What can make your CSNA an effective tool in reducing unwanted inequity of service delivery is how you use narrative as an essential component of needs assessment to get beyond the assumptions built into the data component of the study. Data alone are pure assumption in the sense that the data element associates groups represented by a definition with a count. But these data elements and those highly abstracted definitions actually represent living, dynamic, and constantly changing communities and cultures whose realities have necessarily been reduced for the purpose of data to static definitions. The terms Native American, African American, or deaf-blind paired with a number cannot help but trigger a cascade of assumptions about who these individuals are and what they need. Without the narrative information stream, we cannot know which, if any, of those assumptions are true. Filling out the assumptions of data and definition takes us back to the process of find, discover, design, and respond. The second part of our mantra regarding cultural humility is respectful discovery. Respectful Discovery Some states schedule their CSNA activities for the third year of the triennium. For those states, the activities described in this section need to be built into that third-year process. For states that schedule their statewide needs assessment activities across all 3 years of the triennium, discovery can be an ongoing process executed across those 3 years and culminating in Steps 4 to 22

27 6. Regardless of which approach a VR program uses, respectful discovery can be accomplished only through the intentional design of a venue for gathering the narrative information necessary to fill out the suggestions of the data. The role of narrative and discovery. Having factually identified the presence of a group of underserved persons in the state only informs us of their presence and does not in itself provide the critical information regarding actual service need. Logically, without knowledge of need, we cannot design an appropriate response. Need is often misunderstood because need is a byproduct of aspiration rather than a primary attribute of the present state. In other words, you don t know what you need until you know where you are going. For an agency to discover rehabilitation need for a community or culture in the state, a special narrative assessment event should be developed that can inspire the exchange of aspiration and the identification of the needs those aspirations bring up. At the individual level, the counselor must enter into a sufficiently close relationship with the client to gather some understanding of that unique human being s aspirations. From that common understanding of the client s aspiration, the working alliance composed of client and counselor can discern true rehabilitation needs. We approach the CSNA narrative-gathering strategy in the same way, recommending that the VR agency enter into a working alliance with communities and cultures for the purpose of discovering community or cultural aspiration and the needs that lead to the support of those aspirations. To advance the discovery of true VR need for traditionally underserved populations and persons who are deaf-blind, we recommend that three discovery questions be incorporated into the discovery sessions for the individuals, communities, and cultures you aspire to serve: 1. What is the meaning of the word disability for your community/culture? 23

28 2. What is your aspiration or goal for your community, and how does the condition we call disability impede the achievement of that aspiration? 3. What do you need to overcome that is impeding your progress? The first purpose of these three questions is to demonstrate the service culture s respect for the community being approached. This respectful discovery establishes the basis for a true working alliance. In asking these three questions and taking into account the group s response, a conversation can follow that may fill in gaps of information necessary to overcome assumptions. By dealing with the information generated by these three critical discovery questions, your VR organization will also be in a better position to understand how the VR agency can negotiate elements of cultural dissonance that may stand in the way of designing a service response. The importance of hospitality. Any assessment of the experience of disability at the individual, family, or community level requires a level of intimacy in order to receive the critical information and establish a working alliance with the culture and community. This idea of a working alliance is more familiar to us in the context of the client and counselor, but is often forgotten in assessing community needs. The public sector tends to perceive needs assessment as a process conducted in a public setting, but a community or culture should not be assumed to be a public setting. A cultural setting is governed by the rules of the culture first. While the three questions of discovery can be asked in what we have come to understand as community forums or listening forums, we recommend conducting such forums based on the terms of hospitality for the community from which you seek information. For this document, the PSG defines hospitality as a community s rules of safety, power, intimacy, and spirituality. Importantly, the use of language and translation services should be structured around these same rules when seeking discovery information. The rules of hospitality represent the code that can unlock a conversation 24

29 leading to the aspirations of the individual or community of individuals. The venue design for discovery must be approached with a basic understanding of that culture s sense of safety, power, intimacy, and spirituality. Step 4. Analyzing the Results and Developing Findings Up to this point in the model CSNA process, both the model itself and the commitment to cultural humility have required that the participants in the assessment suspend judgment and assumptions. Step 4, Analysis, finally allows judgment to come into play. Neither the data nor the narrative alone is necessarily sufficient to deliver findings regarding need and subsequent service response design. Through the balancing of the messages from both streams of data, a VR agency is most likely to derive the kinds of findings that will deliver an effective and culturally appropriate service response design. To this end, we recommend building into Step 4 an activity that allows you to obtain another round of comment and feedback from your SRC and key informants regarding the conclusions you are drawing. Do they still recognize the structure and language of the needs conversation in this advanced and very critical phase of assessment? This stage will lead to goals and strategies for the agency, as well as modifications of the larger state plan. Step 5. Developing the Conclusions: Potential Action Strategies (Design and Response) Step 5 represents the point where the VR agency can move into what we are calling design and response. At this point, the VR agency has completed the due diligence and is ready to see what actions are needed to respond to the needs of individuals who reside in traditionally underserved communities. This term applies to cultures united by a common disability experience, such as persons who are deaf-blind. Not only have these individuals been found, but 25

30 through our CSNA we have learned of their living context. The agency is now ready to contemplate actions that will be framed as potential goals and strategies for the state plan. Following the discussion of Step 6, sample recommendations are provided for the traditionally underserved and for individuals who are deaf-blind. Step 6. Informing State Plan Goals, Priorities, and Strategies (Response) The discipline of the model CSNA culminates in Stage 6, where VR agency administration and the SRC make the critical decisions for the agency s larger service model goals and strategies. Just as we recommend in Stage 1 that the agency hardwire traditionally underserved groups into the broad design of the CSNA process, in Stage 6 we encourage the agency to dedicate a goal to the correction of inequity in service response and access for traditionally underserved groups. Even if the state dedicates one of its strategic goals to these underserved communities and cultures, the entire strategy of response does not need to exclusively fit inside one of the goals of the state plan. While we encourage agencies to utilize the state plan goals for the deeper systemic changes that may be necessary to serve these groups, a number of simple procedural changes and educational opportunities are available to the agency to improve service response. For any changes that can occur expediently outside the state plan, we recommend designing and executing the response as quickly as possible. Sample Recommendations Members of the PSG submitted potential responses that might be integrated into either state planning or straightforward structural adjustments within the program. These are offered for the reader s consideration and may serve best in Steps 5 and 6 of the state planning process. 26