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Minority Consumers of Independent Living Services: A Pilot Investigation.

In the United States the care, education and rehabilitation of persons with disabilities have undergone numerous changes over the past decades. Attitudes toward consumers, empowerment, deinstitutionalization, independent living, barrier free designs, multicultural awareness, and education in the least restrictive environment are examples of areas in which changes have occurred (Walker & Wiegmann, 1997; Rubin & Roessler, 1995). Today, the full inclusion movement led by a coalition of consumers and non-consumers mirrors society's desire to integrate persons with disabilities into communities as active, independent and contributing members.

However, society is far from becoming an inclusive one for all consumers, particularly minority consumers. In fact, major obstacles to successful rehabilitation for minority consumers exist today (Atkins, Morten, & Sue, 1998; Dixon & Wright, 1996; Jenkins, Ayers, & Hunt, 1996; Wright, 1993). Primary among the obstacles is a lack of recognition and appreciation of their cultural, ethnic and racial differences by many service providers and institutions (Atkins, Morten, & Sue, 1998). Another barrier is the Eurocentric approach to service delivery by many medical, educational and rehabilitation service providers and institutions (Atkins, Morten, & Sue, 1998). This philosophical or pragmatic stance negates or fails to acknowledge non-European world views and, as a result, fails to provide culturally, ethnically and racially appropriate care and rehabilitation. Structural and institutional barriers in the rehabilitation service delivery system exist for African Americans, Asian Americans, Hispanic Americans and Native Americans (Leal-Idrago, 1993). Placement, evaluation and training are among the most pressing issues facing consumers who are members of a minority group (Atkins & Wright, 1980; Wright, 1988; Wright and Emener, 1992).

Barriers also exist in the pre-service and in-service training of rehabilitation personnel. Leal-Idrago (1993) and Medina, Marshall and Fried (1988) found that cultural sensitivity training in rehabilitation counselor education programs should reflect cultural pluralism (the viewpoint which holds that reality is made up of many different perspectives). In other words, rehabilitation education training programs and service providers need to address not only the individual's physical condition but the historical values and beliefs of the group to which the person belongs (Chan, Lam, Wong, Leung, & Fang, 1988; Dutton, 1992; Herbert and Cheatham, 1988; Leung & Sakata, 1988; Marshall, Johnson & Lonetree, 1993; Martin, Frank, Minkler & Johnson, 1988; Medina, Marshall & Fried, 1988; Rivera & Cespedes, 1983; Wright, 1988; 1993).

Due to the many challenges which may be encountered by minorities with disabilities, assessments of service delivery systems are necessary. As such, this paper reviews the findings of a pilot investigation of an Independent Living program located in the Tampa Bay Area. The purpose of the investigation was to determine whether or not similar barriers existed for minority consumers of this program and, if so, to determine how these barriers impacted the transportation, housing, vocational training, medical, and independent living services received by the consumer.

Methodology

Self Reliance, Inc. (SRI), a local independent living service organization, in collaboration with a Planning Committee, conducted a community forum entitled Minorities with Disabilities Workshop. The Planning Committee consisted of faculty and staff from the University of South Florida and several social service agencies in the Tampa Bay Area (e.g., the Division of Blind Services, Vietnamese Mutual Association, National Association for the Advancement of Colored People, Division of Vocational Rehabilitation, Hispanic Affairs League, and The United Way). The intended purpose of SRI and the Planning Committee was to identify the needs of minorities with disabilities within the Tampa Bay Area. The goals of the workshop were: (a) identify the needs and problems of minorities with disabilities with respect to transportation, housing, medical services, vocational training and independent living; (b) promote awareness and sensitivity to the needs of minorities with disabilities; (c) promote open communication between service providers and minorities with disabilities; (d) promote appropriate outreach methods to unserved minorities; and (e) encourage service agencies to enhance and improve the quality of and access to services for minorities with disabilities.

Focus Groups

To conduct an assessment of the service delivery system from the minority consumer's perspective, a focus group approach was used. A focus group approach can be used to provide information regarding consumer involvement, consumer satisfaction, and program evaluation. Focus groups can serve a variety of program-related purposes such as: a) obtaining general background information about a specific program; b) generating program ideas that can be implemented and tested; c) diagnosing program problem areas; d) gathering information about consumers' impressions about a program; and e) learning how consumers talk about the program or topic of interest (Stewart & Shamdasani, 1990).

A typical focus group consists of eight to twelve people discussing a particular topic of interest and can last from several minutes to one or more hours. Members of a focus group are usually clients (and/or their family members) of a program under investigation. Facilitation is usually accomplished under the direction of two moderators. One moderator serves as the principal moderator whose primary role is to help facilitate discussion, promote interaction among members, probe for details when warranted, and ensure that the discussion remains on topic. The principle moderator typically follows a standard set of guidelines which includes questions participants are asked to respond to. The second moderator is responsible for taking notes throughout the duration of the discussion while noting content and process.

Participants

Participants were 49 individuals (32 female and 17 male) who were from the Tampa Bay Area. Thirty-eight percent (n=19) were African American, 23% (n=11) Hispanic American, 6% (n=3) Asian American, 4% (n=2) Native American, and 29% (n=14) Anglo-Americans. Participants' age ranged from 10 to 60 plus years, with the majority (52%) ranging between the ages of 40-59; all were asked to identify their physical and/or mental disability. Seventeen different disabilities were noted with heating impairment (6) and mobility limitations (5) being the most frequently listed. No other disability was listed by more than two people.

Procedures

The workshop was conducted at the University of South Florida, a large metropolitan institution in Tampa, FL. Prior to the workshop, participants were mailed a cover letter, a brochure explaining the workshop's purpose and a registration form. Those persons interested in attending the workshop completed and returned the registration forms which documented general demographic information. Using the demographic information, participants were systematically assigned to one of four groups through the use of pre-assigned registration packets. This allowed workshop organizers to ensure a balance within the various groups with respect to gender, race, and ethnicity. Participants with hearing impairments were assigned to the same focus group where interpreters provided sign language translation. Participants were instructed regarding the purpose of the workshop and the focus group process in the original letter of invitation and again during the general opening session. Each focus group met in a separate room facilitated by a moderator and a recorder.

Moderators and recorders were non-agency affiliated volunteers and required to attend a focus group training session prior to the workshop. The training, sponsored by a Florida Department of Education representative, consisted of a half day training session on conducting focus groups. Though workshop participants wore name-tags, confidentiality was secured to the fullest extent possible by the use of non-agency affiliated volunteers as moderators and notetakers, and by the omission of participants' names or any identifying features when documenting comments.

The purpose of each focus group was to identify problems faced by consumers in the areas of transportation, housing, medical services, vocational rehabilitation and independent living. Participants also were asked to identify possible solutions to the problems. Five problem areas were identified by members of the Planning Committee as important and as needing more research. As a result, the following list of questions was generated: (a) What serious problems do you have to deal with in trying to get transportation?; (b) How could your transportation problems be reduced or solved?; (c) What serious problems do you have to deal with in trying to get housing?; (d) How could the problems you experience getting housing be reduced or solved?; (e) What serious problems do you have to deal with in trying to get vocational training?; (f) How could the problems you experience in getting vocational training be reduced or solved?; (g) What serious problems do you have to deal with in trying to get medical services?; (h) How could the problems you experience in getting medical services be reduced or solved?; (i) Are your independent living needs adequately addressed?; and (j) How could your independent living needs be better addressed? Participants' responses were recorded and are presented in Table 1 (page 22).
Table 1
Participants' Identification of Problems and Solution
N=49

Transportation

 Problems: freq

* Lack of sensitivity 4
* Unreliable 4
* Lack of knowledge on how to access network 3
* Affordability 3
* Language barriers 2
* Lengthy process 1
* Long wait for the bus 1
* Lack of flexibility 1
* Limited services 1
* Limited access to rural areas 1
* Lack of consumer involvement in political arena 1
* Difficulty obtaining parking permits 1

 Solutions: freq

* Better advertise services (multi cultural) 8
* Expand the systems 7
* Hire diverse staff 4
* Educate consumers about services 3
* Use centralized computers 2
* Do needs assessment 2
* Use small buses for car pool 1
* Simplify process for getting parking permit 1
* Make system user friendly 1

Housing

 Problems: freq

* Accessibility 11
* Affordability 4
* Discrimination 4
* Maintenance of property and support 4
* Lack of a user friendly system 2
* Lack of a knowledge of housekeeping 2
* Lack of information on available housing 2
* Inability to obtain health attendant 1
* Long application process 1

 Solutions: freq

* Provide Cultural Training 3
* Educate housing authority about the
* needs of persons with disabilities 2
* Advertise programs better 2
* Establish a room-mate service 2
* Building more affordable housing 1
* Integrate housing with community 1
* Provide more funding 1
* Contact agencies on available housing 1

Medical Services

 Problems: freq

* Lack of sensitivity 10
* Incompetence 6
* Affordability 5
* Lack of insurance 5
* Lack of eligibility criteria 3
* Lack of knowledge about services and rights 3
* Lack of advocacy 1
* Lack of empowerment 1
* Negative attitudes 1
* Policy 1
* Discrimination 1
* Lack of code of ethics 1
* Lack of accessibility to medical facilities 1
* Cultural/language barriers 1
* Lack of communication 1
* Lack of gender specific doctors 1
* No emergency treatment 1
* Doctors not willing to work with severely disabled
 people 1

 Solutions: freq

* Need for resource manual/handbook 3
* Better trained staff 2
* Sensitivity training (cultural) 2
* More advocacy 1
* Consumer education 1
* Better advertisement 1
* Health care reform 1

Vocational Training

 Problems: freq

* Lack of cultural sensitivity 6
* Lack of reliable eligibility determination 5
* Long wait for coach 4
* Lack of willingness to accommodate 3
* Low expectations 3
* Long application process 2
* Discrimination 2
* Inappropriate placement 2
* Limited programs for training 2
* Overwhelming process 2
* Duplication of training 2
* Lack of compliance with the law 1
* Personality conflicts 1
* Lack of information about job options 1
* Lack of client involvement in process 1
* Lack of integration of all aspects of individual's life 1

 Solutions: freq

* Provide ethnic/cultural materials,
 training and evaluation 4
* Better inform consumers 4
* Better train/screen applicants 2
* Provide sensitivity training 2
* Educate employers about cultural/ethnic
 minorities' disabilities and production 2
* Provide tax incentives to business 1
* Stricter enforcement of guidelines 1
* Provide program outreach 1
* Provide more communication between
 consumers and counselors 1
* Establish networks between agencies 1

Independent Living Needs

 Problems: freq

* Lack of public awareness/sensitivity 5
* Limited access to information/resources 4
* Limited access to facilities 3
* Lack of support services 3
* Lack of affordable housing 2
* Lack of advocates 1
* Lack of assistive devices 1
* Inadequate school transition programs 1
* Limited access to transportation 1
* Lack of networking 1
* Lack of interagency counsel 1
* Lack of social opportunities 1

 Solutions: freq

* More education on resources and info 4
* More & better transition programs 2
* More & better services to ethnic minorities 2
* Development of support groups 1
* More visibility for persons with disabilities 1
* More skill building in academic settings 1

Other Problems

 Problems: freq

* Lack of public awareness/sensitivity 6
* Lack of knowledge on specific minority issues 1
* Lack of information on legal services 1
* Lack of safe accommodations in public places 1

 Solutions: freq

* More advocacy and education (awareness) 4
* Establish more networks 1


Findings

In the area of transportation, the issue of unreliability, lack of sensitivity, lack of information about available services and lack of accessibility to rural areas were often cited. Statements related to unreliability included "the buses are often late for pick ups", "I have to wait too long for a pick up and my condition gets aggravated", and "you can't get through to switchboard". With regard to a lack of sensitivity, comments included "drivers won't wait for you" and "there's not enough notification of bus schedule changes". Some of the solutions included consumer education and awareness about the services, the provision of sensitivity training to transportation personnel, the hiring of (culturally/ethnically) diverse staff, and the development of a more user friendly system.

In the area of housing, some of the more salient points included the lack of accessibility, unaffordability, lack of appropriate accommodations, and a lack of cultural sensitivity. Some statements included "there is no specialized housing for persons who are mentally challenged", "the waiting list for public assistance housing is too long", "public housing is not available in many areas", "most of the available housing is not wheelchair accessible" and "it's almost impossible to change housing if problems arise". Solutions included the development of government sponsored programs, tax incentives for housing developers, education of landlords, and more effective advertisement on available housing for persons with disabilities.

In the area of medical services, participants identified the following problems: lack of sensitivity from health service providers, lack of cultural understanding, lack of desire to work with persons with disabilities, difficulty accessing services, unaffordable services, and conditions not covered by all insurance companies. Participants statements included: "it's hard to find doctors willing to work with severely disabled persons", "doctors are impatient", "we're treated like second-class patients", and "because doctors are only paid a fraction of their regular fee they do not spend much time with you". Some of the solutions to these problems included health care reform, the hiring of culturally competent and sensitive staff, and the development of a network system with information about services.

Among the problems identified in the area of vocational training were: unreliable eligibility determination methods and a lack of cultural sensitivity. With regards to eligibility determinations, participants stated that "counselors do not actively involve clients in the process", "counselors fail to return phone calls", "there is constant turnover of counselors", and "evaluations are unreliable". Comments related to a lack of cultural sensitivity included "counselors are not able to work with Latino clients", "counselors have little knowledge of resources in ethnic communities", and "there is a lack of trained staff interpreters for different languages". Additional problems included having to wait too long for an assigned counselor, limited access to services, and inappropriate testing, training and placement methods. Solutions included the provision of better testing and training techniques, stricter enforcement of Americans with Disabilities Act, increased sensitivity training in counselor education, and improved education among employers and the community regarding minorities with disabilities.

The final areas discussed the adequacy of independent living services. Participants reported a lack of awareness regarding services offered and limited access to agency information and resources as the most common problems. Other problem areas included a lack of empowerment among persons with disabilities, the absence of barrier-free communities, a lack of transportation services, and limited social opportunities. Other concerns expressed included a lack of safe accommodations in public facilities, and a lack of information regarding how to apply for various health related services. Among the solutions offered were the establishment of support groups, development of consumer awareness programs, including an information network system (e.g., newsletters or monthly newspaper) and community education regarding the dynamics of ethnic minority families.

Conclusion

A pilot investigation of ethnic minority consumers of an Independent Living agency was conducted to determine: a) if barriers to successful rehabilitation existed; and b) if so, how these barriers impacted the transportation, housing, vocational training, medical and independent living services received by the consumer. This investigation used a workshop format in which consumers participated in four focus groups. The workshop planners established five goals to be achieved during this workshop. This investigation was successful in achieving one of five workshop goals (#1-identifying the needs and problems of ethnic minorities with disabilities with respect to transportation, housing, medical services, vocational training and independent living). The other goals: #2-promote awareness and sensitivity to the needs of minorities with disabilities, #3-promote open communication between service providers and minorities with disabilities, #4-promote appropriate outreach methods to unserved minorities, and #5-encourage service agencies to enhance and improve the quality of and access to services for minorities with disabilities, were not achieved. These goals could possibly be achieved through the development of public awareness programs, open-house activities, improved advertisement and marketing strategies, or through continued research that uses the preliminary findings of this investigation to include a greater number of minority consumers and service providers.

The majority (71%) representation of ethnic minorities with disabilities provided the workshop organizers and Planning Committee with strong confidence that the information received reflected the needs of minority consumers. Also, since adults age 20-59 made up 95% of the participants and tend to be more active in accessing and using social, medical and related services, the organizers and Planning Committee concluded that the information was probably representative of the needs of typical adult consumers. An evaluation report of this pilot investigation was disseminated to the Board of Directors of SRI, the Planning Committee and was made available to all participants (Martinez, Wright, & Buckner, 1994). The report called for additional research of those ethnic minority groups which were not well represented in this investigation and for further dissemination of the report to members of the community who have responsibility for providing services in any of the areas cited by the participants.

Recommendations

The information gleaned from this investigation suggest that further research is needed to determine if similar barriers are identified in other Independent Living agencies and to more thoroughly investigate the way(s) in which agency services are being provided. Additional areas of investigation might include an assessment of: (a) the adequacy of agency personnel training practices, (b) consumer education and empowerment efforts, and (c) community awareness programs. Information from this investigation can also be used in the development of a follow-up survey instrument. It is expected that similar problems may be identified by ethnic minority consumers of similar programs.

There are several limitations inherent in this pilot investigation which must be noted. Workshop participants resided in a major urban community. The needs and problems of consumers residing in rural areas may be sufficiently different from those identified by the present participants. Findings should not be generalized to all minority consumers in the Tampa Bay area as Native and Asian American consumers were under-represented in the present investigation. Persons with disabilities under the age of 20 and over 60 also were greatly under-represented, thus limiting generalizations to those population of consumers as well. Lastly, the low participation of male consumers must be noted. Similar investigations should be conducted which would attempt to minimize the limitations stated herein.

Due to the ever increasing number of ethnic minorities in the U.S. and the associated high rates of disability among these groups, it is imperative that research of this nature be continued. An understanding of minority consumers' perceptions of services is critical to providing satisfactory services to ethnic minority consumers. In an era of limited funding for social programs it is also critical that service providers continually evaluate and improve measures to ensure that service delivery addresses the needs of consumers.

Author's Notes

We wish to thank the Board of Directors and Executive Director of Self Reliance, Inc. for their contribution to this investigation.

References

Atkins, B.J., & Wright, G. N. (1980). Three views of the vocational rehabilitation of blacks: The Statement: Journal of Rehabilitation, 46(2), 40-46.

Atkinson, D.R., Morten, G., & Sue, D.W. (1998). Counseling American Minorities (5th ed.). Boston, MA: McGraw-Hill.

Chan, F., Lam, C.S., Wong, D., Leung, P. & Fang, Xue-Shen (1988). Counseling Chinese Americans with disabilities. Journal of Applied Rehabilitation Counseling, 19(4), 21-28.

Dixon, C.G., & Wright, T.J. (1996). Service delivery to African Americans with disabilities: How to best train rehabilitation professionals. Rehabilitation Education. 10(2&3), 139-150.

Dutton, D.L. (1992). Factors related to job placement of southeast Asian refugees in Fresco County California. Journal of Job Placement, 8(1), 30-33.

Herbert, J.T., & Cheatham, H.E. (1988). Africentricity and the Black disability experience: A theoretical orientation for rehabilitation counselors. Journal of Applied Rehabilitation Counseling, 19(4), 50-54.

Jenkins, A.E., Ayers, G.E., & Hunt, B. (1996). Cultural diversity and rehabilitation: The road traveled. Rehabilitation Education, 10(2&3), 83-103.

Leal-Idrogo, A. (1993). Vocational rehabilitation of people of Hispanic origin. Journal of Vocational Rehabilitation, 3(1), 27-37.

Leung. P., & Sakata, R. (1988). Asian Americans and Rehabilitation: Some important variables. Journal of Applied Rehabilitation Counseling, 19(4), 16-20.

Marshall, C.A., Johnson, S.R., & Lonetree, G.L. (1993). Acknowledging our diversity: Vocational rehabilitation and American Indians. Journal of Vocational Rehabilitation, 3(1), 12-19.

Martin, W.E., Frank, L.W., Minker, S., & Johnson, M. (1988). A survey of vocational rehabilitation counselors who work with American Indians. Journal of Applied Rehabilitation Counseling. 19(4), 29-34.

Martinez, Y., Wright, T.J., & Buckner, W. (1994). Minorities with disabilities workshop. Unpublished manuscript.

Medina, S., Marshall, C., & Fried, J. (1988). Serving the descendants of Aztian: A rehabilitation counselor education challenge. Journal of Applied Rehabilitation Counseling, 19(4), 40-44.

Rivera, O., & Cespedes, R. (1983). Rehabilitation counseling with disabled Hispanics. Journal of Applied Rehabilitation Counseling, 14(3), 65-71.

Rubin, S.E. & Roessler, R.T. (1995). Foundations of the vocational rehabilitation process (4th ed.). Austin, TX: Pro-ed.

Sanchez, A.R., & Amaya, S. (1992). Hispanic job placement and retention: Cultural considerations for training, placement and job persistence. Journal of Job Placement, 8(1), 23-29.

Stewart, D.W., & Shamdasani, P.N. (1990). Focus groups: Theory and practice. Newbury Park, CA: Sage Publications.

Walker, M.L., & Wiegmann, S.M. (1997). History and systems: Mostly mavericks. In D.R. Maki & T.F. Riggar (Eds.), Rehabilitation Counseling: Profession and practice (pp. 39-54). New York: Springer Publishing Company.

Wright, T.J. (1993). African Americans and the public vocational rehabilitation system. Journal of Vocational Rehabilitation, 3(1), 20-26.

Wright, T.J. (1988). Enhancing the professional preparation of rehabilitation counselors for improved service to ethnic minorities with disabilities. Journal of Applied Rehabilitation Counseling, 19(4), 4-10.

Wright, T.J., & Emener, W.G. (1992). Rehabilitation and placement: Focus on African Americans. Journal of Job Placement, 8(1), 17-22.

Charlotte G. Dixon, Rh.D., CRC, Department of Rehabilitation and Mental Health Counseling, University of South Florida, 4202 E. Fowler Ave., SOC 107, Tampa, FL 33620-8100.3
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Author:Dixon, Charlotte G.
Publication:The Journal of Rehabilitation
Date:Apr 1, 1999
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