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The Beyond Inclusion project was a statewide effort toward the assessment of service delivery for people of color with disabilities. A print version of the complete report or the executive summary is available on request
Linda Keys, Ph.D., Project Director and Principle Investigator; Judy Malone, Ph.D. and Kathleen Russell, DNS., Co-investigators
Ball State University
Indiana Governor's Planning Council for People with Disabilities
“...my disability I can deal with. It makes the world I live in challenging yet 'navigable,' but to be black and disabled is most debilitating because it challenges mobility of the body and mind...”
City of Gary, College Student Focus Group Participant
The following is an abridged executive summary from a report submitted to the Governor's Planning Council for People with Disabilities entitled “Beyond Inclusion”: The Reality of Culture and Disability in Indiana.” The authors encourage readers to review the report in its entirety. This summary does not do justice to the richness of information collected. We recommend everyone to read the full report.
“The project described within these pages is an endeavor that is far reaching in its implications. This undertaking blended qualitative and quantitative methodologies to successfully construct what the research team considers to be a new paradigm for designing and analyzing survey and forum formats and data. As the report is reviewed, the hope is that you will see the value of the approach and, most of all, realize the quality of the information provided by those participating in the process.”
We believe that this is a landmark project, and the Indiana Governor's Planning Council for People with Disabilities should be commended for initiating such a project. As determined by our review of projects in other states, this report is the first of its kind and magnitude undertaken by a State Council on behalf of people of color with disabilities. We want to commend the Council for having the foresight to venture into unknown territory. We realize that to some this was a risky and improbable task. But the Council members had the vision to see that obtaining information at the grassroots was truly the best approach and that through the fulfillment of this project they would be able to serve their constituents' best. We thank them for giving us the opportunity to demonstrate that an informal means of collecting information can be combined with a very formal approach to a successful end. Together, through these research methods, the voices of Indiana's people of color with disabilities were heard on a variety of issues relating to the quality of service delivery and their lives.
We want to express our deep appreciation for the endless support and encouragement from members of the Indiana Governor's Planning Council for People with Disabilities and from our advisory board. Without their candid and enlightening counsel, we know this project would not have been as successful. We give our thanks for guiding us through the rough times to meet this end.
Finally, we thank the participants who allowed us to learn about their lives. They were the heart of the project. We listened to them and learned of a world very different from the one we knew, and we came away so much richer in the process.
Linda D. Keys, Ph.D.
Judy A. Malone, Ph.D.
Kathleen Russell, DNS
The Beyond Inclusion project was intended as a statewide effort toward the assessment of service delivery for people of color with disabilities. A major consideration of the project was how to reach a population who has typically been missing from community and organizational input processes. Given this concern, a determination was made to include an advisory group to oversee this project from initiation to the development of the recommendations.
The project design also included both focus groups and surveys intended to ensure the broadest cross section of participants and richest collection of information. Focus groups provided the baseline information that the team used to design the survey, and the survey was intended to expand upon the focus group discoveries. This multi- method approach was used in the project mainly to ensure that diversity was maintained that targeted population groups were reached, and that the project was representative of the population group in views and composition. The approach was also used to show that the qualitative responses obtained during the focus groups were supported by other members of the population. Hence, more than one method was used to assure better representation of people with disabilities and to enable the information to be cross referenced among project participants. In addition, the project also included a review of state programs developed particularly for people of color with disabilities.
PROJECT SUBJECT GROUP
For the purposes of this project, disability refers to any physical or mental impairment that substantially limits one or more major life activities (American Disabilities Act of 1990). In addition, the minority population includes people of color with disabilities who are African Americans, Hispanic/Latino Americans, Asian/Pacific Islander Americans, and Native-Americans and covers the life span from infancy to beyond retirement.
The advisory boards, focus groups, surveys, state programs review, and subsequent analysis of data were guided by a modified participatory action research strategy. This model requires active participation within the project by those who are invested in the problem or issue. People of color with disabilities and the various service systems, agencies, and schools all are vested in the outcome and the results, and they contribute substantially to the design, data collection and analysis, and interpretation and dissemination of the results for the project.
Several sources and methods of collecting information were used to investigate quality of services in this project. Objective and subjective methods were used, as were qualitative and quantitative techniques. The following methods were utilized to provide information: focus group sessions, an advisory board, and provider and consumer surveys. All methods potentially played an important role in the quality of life assessment and provided alternative explanations for the conditions under study. The use of multiple methods increased the quality of the research by producing more reliable and valid patterns of results. Additionally, linkages between information may be more clearly illustrated when multiple methods are used in the research process.
Nine counties were selected as project locations. The sites were chosen because of their diverse populations and because the areas were serviced by the Minority Health Coalition, the group selected to administer the project surveys. The counties were located throughout the state including Lake, Elkhart, Allen, Tippencanoe, Madison, Marion, Vigo, Clark-Harris-Floyd, Vanderburgh and other counties.
An informal 50 state telephone program review was conducted to determine the presence or existence of state funded initiatives for increasing services to people of color with disabilities. If other states had such initiatives, the intent was to analyze the programs that have a strong cultural inclusion thrust for the purpose of generating policy alternatives for the state of Indiana. Because more and more policy decisions are delegated to states from the federal government, the thrust of this review was to collect data about how state monies are used to reach out and include minority populations with disabilities.
Federal initiatives, agencies, and programs run by private or not-for-profit institutions were excluded. Other works by advocacy groups and special interest groups are valuable, but state policies and initiatives are critical to the development of statewide programming.
A minimum of four state government departments were contacted by telephone in each state. Targeted departments included: education, social services, health, and mental health. These state agencies are typically gate keepers for state-supported disability services and/or they provide a wide array of direct services.
Project staff asked for the department or office that handled programs for either disabilities or minorities. When the project staff connected with the appropriate office and person, project staff asked the general question:
If there were programs or policies that existed, the project staff asked about the initiative, if it was state funded, and how it worked. Another staff person verified the information.
The project staff found that it was difficult to collect this information. It was not uncommon that numerous referrals were made to many different offices and many different people. This effort required more time and resources than anticipated. The findings of the survey showed that there are few state-funded programs or policies specifically for ethnic minorities with disabilities. There are state matching monies for some federal initiatives, and there are state-funded programs for people with disabilities, but these programs usually do not have specific policies targeting racial ethnic populations. The Project was successful in identifying one program.
The program that was identified was in Utah. This program is for migrant seasonal farm workers with disabilities that specifically targets Asians and Pacific Islanders, who comprise 2 percent of the state population. The program grew out of a migrant farm workers movement in the 1970's that protested unsafe farming methods and conditions that injured many workers. The Utah Division of Rehabilitation received a $100,000 grant from the federal government for the administration of the program. The state provides funding for services which include psychotherapy, physical therapy, occupational therapy, and assistive equipment. The goal of the program is to help vocationally impaired seasonal workers return to work. The division staff described the program as successful.
When agency personnel responded to questions, there were three general responses: positive, defensive, and references to affirmative action programs. Employees who worked with ethnic populations and their issues were enthusiastic, knowledgeable, and dedicated. These individuals valued the need for specific programs for ethnic groups with disabilities. Conversations with these agency personnel tended to last 10 minutes or longer and often delved into the specific state issues of the ethnic and disability populations. Some were quite candid about their dissatisfaction with services and the state's handling of ethnic minority and/or disability issues.
Some agency personnel sounded defensive. The typical response was: “Our services and programs are for everyone with a disability. We do not cater to specific populations.” These staff people were not aware of specific access issues for minorities with disabilities. The typical response was, “I thought people with disabilities were minorities.” The phrase “ethnic minorities with disabilities” was often used by project staff in an effort to clarify the intent of the question. Two dramatic responses were: “I've never heard of such problems” and “Not in this state!”
Another typical response was to refer the project staff to affirmative action or equal employment opportunity offices. While employment is one aspect of disability services, it remained unclear about how EEOC or affirmative action programs answered our question. It is possible that agency personnel referred the project staff to these offices because many of the issues of access are related to employment. These offices did not have information about difficulties people of color have in accessing state/public services.
COMMUNITY FOCUS GROUP SESSIONS
A major component of the project was the focus group phase, highlighted by the conducting of 27 focus group meetings. During these sessions, the process was targeted toward assessing the concerns, service needs, and opinions, in general, of people of color with disabilities. It also was imperative to the research effort to include a broad range of perceptions about conditions and problems facing people of color with disabilities. Therefore, considerable attention was given to ensuring that participants were representative of people who are often marginalized in community input processes.
Of the 27 focus group sessions, 9 sessions were conducted for providers of disability services. The remaining 18 were with minorities with disabilities and/or their significant others who provide direct care and/or support. Each focus group met with one of the project staff for approximately 2 ½ hours. During this time the focus groups were given the task of participating in four exercises: (1) portraying their community, (2) envisioning the system of the future, (3) defining the access problems for minorities with disabilities, and (4) exploring solutions and programmatic thrust. The consumer focus groups were structured so that their stories and experiences examined attitudes and behaviors of providers and biases in geographical and/or cultural structures and attitudes. The provider focus groups were structured to explore their perceptions of the barriers and facilitators for service utilization, educational opportunities, administrative and staff employment, and agency policy positions on minorities with disabilities.
A review of the data found the top issues raised during the sessions were generally the same. More interesting is the degree to which the issues presented at the focus group sessions overlapped. Every focus group session produced a list of issues that, after computerization and analysis of the data, supported the observations of the project team. The following presents, categorically, the issues as presented by the participants.
Below are the images as classified by the participants. They were categorized by image and theme and group by focus type. A ' ' appears in the focus group columns if at least two or more groups presented the image. In addition, a ' ' is placed in the Both column if the image met the above condition and was presented at least three times during provider and consumer focus groups sessions.
List of Illustrations Drawn by Focus Group Participants
|Lame Animal (Horse & Donkey)||.||.|
|Monkey on the Back of Consumers||.|
|Wolf in Sheep's Clothing||.|
|Snake Weasel Worm||.||.||.|
|Dog/Dragon Red Tape||.||.||.|
Focus Group Exercise Evaluation
The final exercises required the participants to list issues related to their service delivery systems, to develop a vision of the perfect delivery system, and to provide a list of program suggestions to make the system work better for people with disabilities. These tasks called for the groups to evaluate services and determine as a group what issues they believed were problematic, envision a better system and provide a strategy to correct the system. A number of different issues were detailed during these task, however, there were many that appeared two and three times across groups, sessions and counties. Below are tables delineating the comments, suggestion and issues raised during these exercises. Each table consists of any items that were raised at least three times in either the provider or consumer sessions and a ' . ' is placed in the Both column if the image met the above condition and was presented at least three times during provider and consumer focus groups sessions.
List of Focus Group Service Delivery System Issues
|Access to Service||.||.||.|
|Confusing / Unfriendly System||.|
|Lack of Understanding and Coordination||.||.||.|
|Lack of Understanding of People of Color||.|
|Lack of Program Information||.||.|
|Comprehensive Sensitivity Training||.||.|
Final Comments by Focus Group Participants
During the sessions, participants were cooperative except when asked to draw as part of the first exercise. At this point, many expressed concern about their ability to portray their views in this manner. After the exercise ended, the discussion that resulted in reference to the illustrations improved the disposition of the participants. Serious discussion was then interspersed with laughter as the groups began to examine many critical issues that plague the system. Although, the interaction between group participants was spirited at times, the seriousness of the subject matter was reinforced during the open discussion periods.
Approximately one month into the implementation of the focus groups the project team began to notice that the participants were responding similarly to the exercises. It also was observed that the focus groups ended with the participants having a positive reaction to the process. Community focus groups challenged the participants to consider the present and future needs of their communities, as well as to reveal their aspirations for their own lives. Focus group members were asked to reach a consensus on the possible approaches for achieving recommended goals. Despite the relaxed setting, the participants produced very useful and meaningful information about the concerns of people of color with disabilities. Given the range of geographic locations and the income level of the participants, the responses were surprisingly the same. In addition, this process proved to be an effective tool in gaining insight into how people really feel about the service delivery system. One of the most important reasons for using group meetings in this project was that some methods do not always portray the total picture of the situation, in this instance, the quality of services for the disabled. Other methods also might not have reached the diversity of people found in this project. Yet, in this instance, the results were considerable.
The illustrations of the service delivery system drawn during the focus group sessions were distinct to each group, but the overall images were similar. Each characterization, regardless of the picture was latent in stories of troubles trying to subsist as a person of color with a disability. The stories made it clear that to be a minority and disabled is a two-edge sword.
Information from people with disabilities, both users and nonusers of services, was collected by 9 Minority Health Coalitions across the state of Indiana. A total of 2,031 persons with disabilities participated in the study. The survey had several sections: Quality of Life, Services, Access and Personal Decisions, Sources of Help, Issues, Employment, Personal Health, Culture, Demographics, and Income.
Data was collected from both White/Caucasian and ethnic minority groups. The ethnic minority groups were African Americans, Hispanics/Latinos, Asians/Pacific Islanders and Native Americans. The greatest proportion of the groups were African Americans (67.6%). Whites/Caucasians comprised the second largest group at 18.2%. Forty-eight respondents choose "other"; frequently they wrote in “biracial” or “multicultural” or listed more than one ethnic group. Sixty-six respondents did not select any category.
Number of People With Disabilities by Ethnic Group
Caucasians/Whites were significantly more likely to be users of services (p. <.001) than any other ethnic group. Asian/Pacific Islanders had the largest percentage of nonusers. The services which defined who were users of services, were composed of 19 services collapsed into 5 categories: (1) housing, (2) transportation, (3) employment, (4) general health services, and (5) maintenance of home and self.
User And Nonusers of Services
Respondents identified as many as four separate disabilities. There were a total of 88 separate disabilities identified. The types of disabilities listed were collapsed into the 16 categories used by Vocational Rehabilitation Services.
African Americans, Native Americans
* mental and nervous
* mental and nervous
* visual and other nervous system
* mental and nervous
* cardiac and circulatory
* cardiac and circulatory
Average Age and Gender of Ethnic Groups
The ages of respondents ranged from 1 to 99 years (with parents responding for those under 18 yrs). Females dominated the respondents. There were more females respondents in all groups except the Native American group, which was composed of almost two-thirds males.
Percent of People with Disabilities by Sex and Ethnic Group
Two extremes of educational levels existed in the sample. Almost half of all groups, African Americans, Native Americans and Caucasian/Whites, did not graduate from high school or have a GED. More than one-fourth of the Hispanic/Latino respondents (27.8%) and less than half of the Asian/Pacific Islanders (48.1%) had earned college degrees, compared to almost a third of Caucasian/White respondents (31.5%) and Native American respondents (32.3%).
The majority of respondents had low incomes. African Americans had the lowest reported total household incomes with nearly half (42.5 %) under $5,000 and approximately 25 percent between $5,000-$9999. Hispanic/Latinos reported the second lowest incomes with more than one third under $5,000 (38.3%) and 20 percent between $5,000-$9,9999 (table 3.9).
Household Incomes of Respondents
Total Income of Respondents by Percent and Ethnic Group
OTH under $5,000
Abstract/Overview of Findings
Quality of Life
A series of questions were asked pertaining to the respondents' perceptions of their quality of life. African Americans and Hispanic/Latinos consistently rated their personal well being, level of accomplishment, standard of living, and outlook on life as low compared to the other groups. Perceptions about quality of life were significantly lower for African Americans than for Caucasians/Whites (p <.001). A greater proportion of Native Americans forecasts their quality of life as becoming worse in the next 10 years than any other group.
Respondents were asked how much they agreed or disagreed with items pertaining to characteristics of services that affect access. A greater proportion of African Americans were distrustful of government programs and, when compared to other groups, did not feel in control of the services they need to cope with their disabilities. African Americans and Asian/Pacific Islanders were more likely to perceive that training and job development opportunities do not exist. A greater proportion of Hispanic/Latinos feel that both language and communication are problems when they need services. They do not feel they can talk freely to their providers, and they do not have adequate adaptive equipment. Asian/Pacific Islanders were most likely to perceive that interpreting services were not available. A greater proportion of Native Americans feel that transportation is a problem. Caucasians/Whites, more than other groups, perceive that there is too much red tape.
Further analysis for significant statistical differences (p < .05) between African American and Caucasians showed that African Americans were more likely to disagree on:
* existence of training and job opportunities
* can talk freely with providers/teachers
* have adequate adaptive/assistive equipment
* too much red tape
* people who work with me care about me
* want to talk to a real person when call for service
* satisfied with services
* aware of disability services
Additional characteristics of services were identified that impacted upon service access. A greater proportion of African Americans perceive that staff who work with them do not care about them when compared to all other groups. A greater proportion of Native Americans believe that services are fragmented, adequate housing is not available, and services are not easily accessible. Asian/Pacific Islanders report more dissatisfaction with services when they call an agency and that different materials in their language are not readily available. African Americans and Asian/Pacific Islanders were more likely not to be able to easily get to services in the community. A greater proportion of Caucasian/Whites wanted to talk to a real person when calling agencies.
Hispanics/Latinos and Asians/Pacific Islanders were less likely (p < .0001) than other groups to agree that interpreting services are readily available
Various barriers to accessing services were identified. When compared to all groups, a greater proportion of Native Americans feel that it takes a long time to find out what is available and waiting lists are too long. They are dissatisfied with services, and unaware of most services for persons with disabilities, and that service providers do not visit them. Hispanics/Latinos were most likely to believe there are too many rules and regulations and that eligibility requirements are too strict. A greater proportion of African Americans feel that staff do not talk to them like real people. When seeking services, African Americans reported that staff act as if they are taking the staff's personal money or resources. Native Americans do not see services as being convenient.
Further analysis for statistical significant differences showed (p <.05 ):
* African Americans and Hispanics/Latinos feel more comfortable talking to someone of their own race about their problems than were Caucasians/Whites
* African Americans and Hispanics/Latinos were more likely to disagree that people running their communities care about what happens to them than any other group
* Hispanics/Latinos were more likely than Caucasians/Whites to disagree that they feel part of the community
Decisions to Access Services and Personal Factors
Respondents were asked to rate their level of agreement or disagreement on items about personal factors that affect access to services. Hispanic/Latinos and Asian/Pacific Islanders were more likely find it hard to get their service providers to work together. A greater proportion of Native Americans cannot afford their medications, and they have a hard time getting information about services. Native Americans also find it hard to ask for help, feel more needs to be done to prevent problems, and perceive their income is not enough to meet their needs. African Americans and Native Americans were more likely to feel that they are not treated with respect when they go for services. Hispanic/Latinos were most likely not to feel a part of their community. A greater proportion of Asian/Pacific Islanders feel that people treat them differently because of their disabilities and they feel more comfortable talking to someone of their own race about their problems. African Americans were most likely to feel that people running their community do not care about what happens to them, that public officials in their community do not care what they have to say, and that they cannot get to where they need to go.
Sources of Help
Respondents were asked to rank their choice of persons and agencies when they needed help. All groups were most likely to rank family and physician as one of the top three choices. In addition, the church or minister was ranked in the top three ranks for African Americans, Native Americans, and Hispanic/Latinos. Friends and neighbors were in one of the top three choices for Caucasians/Whites and Asian/Pacific Islanders.
The top three issues in descending order were identified for each groups. African Americans identified respect, transportation, and information. The top issues for Caucasian/Whites were respect, transportation, and information and employment. Native Americans identified transportation as the top issue followed by respect and employment. Hispanic/Latinos selected information, respect, and insurance. The top issues for Asian/Pacific Islanders were insurance, costs and information.
African Americans were least likely to be employed. More than three- quarters of unemployed African Americans were retired, unable to work or their disabilities prevented them from working. Native Americans were more likely to rate employment choices lower than other groups. More than half of African Americans (54%) perceived no change in their financial standing in the last year. In responding to the question “How do you get around?,” African Americans and Native Americans were most likely to get a ride. The other groups were more likely to drive themselves.
When asked to rate their personal health, a higher proportion of African Americans rated their health as not good compared to all other groups and rated themselves in poorer health than Caucasians/Whites (p<.001). Hispanic/Latinos were most likely, of all the groups, not to have seen a physician. Family doctors are the usual providers of health care for illness or routine care across all ethnic groups. The emergency room is the second most usual provider of health care for African Americans and Native Americans. Hispanic/Latinos were least likely to have medical care available when needed. African Americans, Native Americans, Hispanic/Latinos, and Asian/Pacific Islanders were significantly less likely than Caucasians/Whites to believe that most people had access to quality care (p=.001). African Americans more often felt that only people with money are the only ones who can get quality care.
Hispanics/Latinos were least likely to have health insurance. African Americans were most likely to have public health insurance, and Asian/Pacific Islanders were most likely to have private insurance. Asians/Pacific Islanders identified their health insurance as most adequate, whereas, Hispanics/Latinos identified their health insurance as least adequate.
Hispanic/Latinos and African Americans more often agreed that staff of a different race cannot possibly understand their problems and that race is a disability. Native Americans most often agreed that when they get services from someone other than their race, the staff need to be sensitive to their culture. Even if the staff are from different cultures, they should understand the client's background. African Americans and Native Americans agreed more often that people of different races are treated differently. Not surprisingly, these two ethnic groups also agreed more often that their race adds to their problems with their disabilities. African Americans and Asian/Pacific Islanders more often agreed that access to services is influenced by race and that when they go for services, the race of the staff matters to them.
* Differences do exist in access to services for ethnic minorities
* Ethnic minorities were more likely than Caucasians/Whites to identify interpersonal barriers which included
* Lack of respect and non caring staff
* Prefer talking about problems with staff of own race
* Staff do not talk to them like real people
* Staff act as if the client was taking the staff's personal money or resources
* Cannot talk freely with providers
* Beliefs that access to services is influenced by race
* Beliefs that staff of a different race do not understand the problems of ethnic minorities
* Systems barriers for Native Americans were lack of transportation, fragmented services, inaccessible services, long waiting lists, unaware of services, inconvenient services
* System barriers for Hispanics/Latinos were too many rules and regulations, restrictive eligibility
* System barriers for Caucasians/Whites were too much red tape, want to talk to a real person when calling for services rather than an automated answering system
* Decreased satisfaction with services was a common concern for African Americans and Asians/Pacific Islanders
* Language and communication barriers and lack of interpreters and bilingual materials had the greatest impact on Hispanics/Latinos and Asians/Pacific Islanders
* Quality of life and perceived health status were rated significantly lower for African Americans than for Caucasian/Whites
* All groups regardless of race or ethnicity were more likely to seek help from informal networks than from service agencies
* Transportation is a major issue for African Americans, Caucasians/Whites and Native Americans
* Access to information and insurance are major issues for Hispanics/Latinos and Asians/Pacific Islanders
Information about providers was collected by surveyors from the Minority Health Coalitions across the state of Indiana. The surveyors contacted people who provided a wide array of disability services. Direct providers and administrators were contacted. The average response rate across all of the Minority Health Coalitions was 42 percent for a total of 404 providers. Providers were asked to report about the services their agency provided as best they could. The survey took an average of 30 to 45 minutes to complete.
In some parts of the survey, there was a noted lack of responses from providers. About 50 percent of respondents provided caseload profile information, 40 percent responded to questions about outreach efforts, roughly 87 percent responded to items on community health, 30 - 50 percent of providers responded to recruitment, retention and cultural items.
One-fourth of the providers were health related (24.8%), 15 percent provided education, and 10 percent were public services/transportation.
* 39 % had public & private funding
* Half were nonprofit
* Almost half served the county
* 75 % provided direct services
Number and percent of providers by type of service
|Public services and transportation||42||10.4%|
Overall, agencies included residents in addressing community needs. However, there are some problems. For instance,
Caucasian/Whites providers are the lowest in including residents (71%).
* Staff providers are lower in including residents compared to administrators.
* Native American and Hispanic/Latino providers routinely include residents.
The 55 percent of providers (N=55.2%) agreed that a group of residents could be effective in helping their agency staff address community issues.
Providers were asked to list the most pressing issues in their area. This question resulted in 41 different responses; each provider was allowed up to four separate responses. These were then totaled; funding was the most pressing issue followed by jobs, access to services, transportation, and violence.
Use of Services/Outreach
Providers reported that minorities readily use their services. Eighteen providers gave reasons why minorities do not readily use their services which included no interest, trying to reach them has been hard, not enough minorities on staff, and lack of money to advertise.
The top outreach efforts to minority/ethnic groups were
* Outreach, education or health services
* Specific programs or classes
* Equal opportunity/affirmative action
* Multicultural center/education
* Bilingual staff
Strengths and Weaknesses
Providers were asked to list their strengths and weaknesses of provider agencies in terms of disability services and resources. The strengths were quality programs and staff and agency relationships and handicap access. The weakness of agencies were limited services, costs, staffing and handicap access.
Community health indicators showed that almost half of providers perceive that most people do not have equal access to medical/health care; and feel that only certain types of people are able to get quality health care. Almost 50 percent of providers do not perceive that people have equal access to health care. Over 50 percent of providers believe that only certain types of people are able to get quality health care. African American providers do not believe there is equal access to quality health care and 75 percent of providers rate health services as good
Percent of Agreement on Community Health Indicators Comparing African American, Other Ethnic and Caucasian White Providers
CW% People have equal access to medical care.
66.7 Only certain types of people are able to get quality health care.
33.3 Generally, health care services in community as good.
Community Quality of Life
Although there is a slightly above average rating of provider satisfaction with quality of life of the community, one-fourth of the sample was dissatisfied. African American providers were more than twice as dissatisfied with the present quality of life for people in the community as compared to Caucasian/Whites. Administrators were also more dissatisfied when compared to staff. The group most satisfied were other ethnic provider groups who were not African Americans followed by Caucasian/Whites.
Community Quality of Life Ratings by Percent Comparing African American, Other Ethnic Group with Caucasian/white Providers
|Taking all things into consideration, how satisfied are you with the present quality of life for people who live in this community?||47.1 %||85 %||71.4%|
Recruitment and Retention
Only 19 percent (n=79) of providers reported information about recruitment of minority staff. These efforts were 42 percent effective and 39 percent were neutral about the effectiveness. Specific programs to recruit minorities that were listed included equal opportunity/affirmative action, contact minority professionals/churches, outreach, referral from agencies and individuals, and media ads in minority newspapers/publications. Other approaches included evaluation and assessment of individual skills, recruitment from area served, mentoring/internships, and a committee on recruitment.
Twelve percent of providers (n=49) reported having a retention programs for ethnic staff. These programs focused on one of two areas: (1) assisting Caucasian/Whites to engage more with minority staff or (2) incentives to retain minorities (benefits, reasonable accommodations, flexible hours, and community involvement with minority activities, etc.)
A series of questions were asked to assess cultural training activities and effectiveness. Almost half (49.9%) of the providers indicated that their agencies had training for cultural sensitivity. Of those, about half (49.5%) of the programs were mandatory. The mandatory programs were rated, on a 1 to 5 scale of effectiveness, as slightly above neutral (Mean=3.51, 1=not very effective, 5=very effective). Agencies help staff become more comfortable with ethnic groups by (in descending order of frequency):
* materials depicting minorities positively
* flexible agency policies to meet different cultural needs
* cultural diversity training
* cultural experiences in the minority community
* information available in other languages, and
* decorations reflecting various cultures
The most reported, and overwhelming, change brought about because of cultural training was “improved understanding and relations across cultures.”
Providers reported that they would let staff attend a cultural training session during the work week (95.6%) even if cost was a factor. Providers who said cost was not a factor would also let staff attend (92.8%). This finding is interesting to note because only 42 percent of all agencies had a training program for cultural sensitivity.
Additional Services Needed
Providers identified additional services that are needed for minorities with disabilities in the community. The most frequently identified needs were:
* improved transportation,
* knowledge of how to use services and information,
* access to services,
* jobs, and
* increased funds for programs
Providers and their Agencies
Providers were asked to rate a series of statements about the services delivered by their agency/school. These statements examined attitudes, communication, the community, costs of services, employment, recruitment and retention of minority staff, their agency, and transportation.
* Staff need to improve attitudes toward minorities.
* Almost 86% of providers treat clients the same regardless of race or culture.
* Almost 18% of providers agree that other staff have problems working with minorities
Caucasian/Whites providers agreed the most, over all ethnic groups, that staff have a positive attitude towards minorities, while Hispanic Latino providers agreed the least. Staff had a lower percentage of agreement than administrators. Asian/Pacific Islander providers were more vehement in disagreeing. Over 50 percent of all providers disagree with needing to consider the race of clients before recommending services. Twenty to thirty percent of providers from all ethnic groups, with the exception of providers from the Other ethnic group, agreed that the problems of minorities are more complex. A companion statement, “Generally, the problems of minorities are more difficult to solve,” was agreed to by 66.7 percent of Hispanic Latino providers. Providers also tended to agree that staff care for and respect clients, but Asian Pacific Islander providers disagreed, and Hispanic Latino providers were lowest in agreement
An interesting, but disturbing finding amongst responding providers was the percentage, even though its low (5-16.7%), who disagreed that there is a need to assist those with disabilities. Nineteen to forty percent of providers agreed that other staff have problems working with minorities.
Services: Percent of Providers' Agreement Comparing Ethnic Groups
|Generally, staff have a positive attitude towards minorities.||74.6||85.7||87||33.3||60|
|I need to consider the race of clients before recommending services.||23.8||33.3||20.8||16.7||25|
|The problems of minorities are more complex.||32.5||28.6||25.2||33.3||20|
|Staff care and respect the clients.||83.9||71.4||91.8||60||80|
|There is a need to assist those with disabilities.||85.9||100||86.8||100||80|
|Generally, the problems of minorities are more difficult to solve.||29||28.6||19||66.7||40|
|I treat all clients the same regardless of race or culture.||78.6||100||88.2||83.3||80|
|Other staff have problems working with minorities.||19.4||---||12.2||16.7||40|
|Print materials are in Spanish.||27.8||42.9||37.2||50||40|
|Language barriers are a problem.||16.7||---||26.1||33.3||20|
|Print materials are in braille.||19.8||42.9||17.9||20||---|
|A telephone for the deaf (TDD) is easily available.||30.7||42.9||40.6||40||20|
|Sometimes it is hard to understand African American clients.||7.1||16.7||13.4||16.7||---|
|Sometimes it is hard to understand Latino/Hispanic clients.||13.8||16.7||21.3||20||---|
|Sometimes it is hard to understand Native American clients.||7.6||28.6||10.9||20||---|
|Sometimes it is hard to understand Asian clients.||12.3||16.7||22||33.3||---|
Providers also assess the quality of life in the community and services. Over one third agreed that the quality of life of persons with disabilities is good in their community. But housing is a problem (43-60%), and 33 percent of providers reporting agree that services are fragmented. Forty-two percent of administrators agree that services are fragmented.
Services: Providers' Percent of Agreement to Statements About Their Community
by Ethnic Group
|The quality of life of persons with disabilities is good in this community.||21.5||42.9||31.8||83.3||16.7|
|Adequate housing is a problem.||51.3||42.9||61.5||50||60|
|Community services are fragmented.||38||14.3||41.8||---||40|
Reimbursements by third party payers is a problem, according to 40 percent of the providers, whereas, 50 percent agree that fees are reasonable.
Services: Providers' Percent of Agreement to Statements about Costs
by Ethnic Group Percent
|Reimbursement by third party payers is a problem.||41.6||28.6||53.8||66.7||40|
|Fees are reasonable.||49.2||71.4||59.2||33.3||40|
* Jobs are a major need.
* 13% of providers disagree that people with disabilities should work.
* 15% of providers do not encourage people with disabilities to work.
Services: Providers' Percent of Agreement to Statements about Employment or Jobs
by Ethnic Group
|There are not enough jobs in the community for the disabled.||59.8||42.9||48.6||33.3||40|
|Job training programs are effective.||40.7||71.4||47.1||33.3||20|
|Persons with disabilities should work.||54.7||50||58.6||83.3||50|
|Persons with disabilities are encouraged to work.||63.9||57.1||54.6||66.7||100|
When rating statements about recruitment and retention of minority staff, Asian/Pacific Islander providers were lowest in agreeing that their agency retains minority staff. Only 45 percent of administrators agreed that qualified minorities are readily available for employment.
Services: Providers' Percent Agreement to Statements about Recruitment and Retention of Minority Staff by Ethnic Group
|Our agency retains minority staff.||76||85.7||65.5||66.7||40|
|Our agency actively recruits minority staff.||52.9||42.9||41.1||33.3||50|
|Minority staff are not available in our area.||13.3||14.3||17.6||16.7||20|
|In our area, there are no minorities to hire.||8.7||---||7.3||---||---|
|Qualified minorities are readily available for employment.||61.4||28.6||42.3||16.7||40|
Services: Providers' Agreement about Their Agency by Ethnic Group
|Our services are adequate to meet the needs of the community.||57||57.1||57.7||50||25|
|Staffing is adequate.||42.6||57.1||51.3||66.7||60|
|More adaptive equipment is needed.||46.8||42.9||52||66.7||75|
|Waiting list is long.||40.4||50||43.9||50||60|
|Staff know the services available in the community.||54.1||71.4||65.6||66.7||50|
|Our facility is easy for the disabled to use.||61.2||66.7||65||83.3||80|
|Case management is effective.||52.8||100||60.7||50||---|
* About 1/3 of agencies need more staff.
* Less than 20% of providers disagree that services are adequate.
* Over 50% of providers need more adaptive equipment.
* Waiting lists are too long.
* Providers need more information about what's available in their community.
* Slightly more than half of providers agree that case management is effective.
* Transportation is a problem.
Services: Providers' Responses to Statements about Transportation by Ethnic Group Percent
|Public transportation is easily accessible.||35.9||57.1||28||33.3||16.7|
* Nonprofit agency providers were more likely than private agency providers to disagree that public transportation is easily accessible.
* Nonprofit and public agency providers were more likely than private providers to agree that fees are reasonable.
* Public providers were more likely than private providers to agree that staff know the services available in the community.
* Nonprofit providers were more likely than public providers to agree that reimbursement by third party payers is a problem.
In looking at the differences between staff and administrators, statistically, staff were significantly more likely than administrators to agree that
* public transportation is easily accessible,
* qualified minorities are readily available for employment, and
* waiting lists are long.
Administrators were significantly more likely than staff to agree that
* their agency actively recruits minority staff,
* adequate housing is a problem, and
* fees are reasonable.
A major concern throughout the provider responses was the missing data particularly in reporting of ethnic/minority caseloads and data about recruitment and retention of minority staff and cultural factors. There were major agreements across the service providers and administrative/staff. The agreements included
* Funding, jobs, access to services, and transportation are major issues.
* Agency weaknesses were limited services, costs, staffing and inadequate handicap access.
* Communication was a major issue for Native Americans, Hispanic/Latinos and Asian/Pacific Islanders providers.
* There are limited materials in other languages or braille.
* A small percentage (5-16%) across all ethnic groups did not see a need to assist those with disabilities.
* Community services are fragmented with long waiting lists and in need of additional equipment.
* Payment for services or other resources are a problem.
* Recruitment and retention of minority staff are a challenge.
Areas of disagreement between the providers were:
* Staff providers perceived respect as the top priority issue.
* African American providers perceived a marked problem in access to medical care.
* Providers from ethnic groups felt that “certain types” of people were able to receive quality health care.
* African Americans were more dissatisfied with the quality of life for community residents compared to other ethnic providers.
* Caucasian/Whites felt that staff have a positive attitude towards minorities and care and respecte clients. Staff disagreed as did Asian Pacific Islanders.
* Over 50 percent of all providers disagree with needing to consider race of clients before recommending services.
* Hispanic/Latinos, African Americans and Asian Pacific Islanders do not evaluate job training as being very effective.
CHALLENGES TO ACCESS AND STRATEGIES
This landmark project examined the perceptions of 2,031 people with disabilities who do and do not use disability services across major ethnic groups, as well as those of 404 providers of disability services. This study was guided by a large advisory committee of providers and people with disabilities. The survey was grounded in the realities that consumers and providers shared through 27 focus group forums held across the state of Indiana. Several perspectives were threaded through this project. The first perspective was derived from the theoretical model that guided the project in concert with the results of the surveys and the comparative data analysis. The second perspective was gleaned from a series of meetings with our advisory board and with participants who attended the workshop “Beyond Cultural Inclusion” at the 1997 Indiana Conference for People with Disabilities sponsored by the Indiana Governor's Planning Council for People with Disabilities. People were asked to write their suggestions on a form and provide the specific information that triggered the idea. Sometimes, the suggestions did not capture the richness of the discussion. Audiotapes of the advisory board meetings were reviewed to insure that salient suggestions were not overlooked. The third perspective was re-examination of the focus group forums with attention to specific suggestions that individuals and providers offered and a review of comments that providers and consumers wrote on the surveys. These suggestions include both the program and human aspects that permeate all disability services. These suggestions were grouped into three general areas: issues, access, and strategies that families and people with disabilities, advocates, providers, administrators, and public policy decision makers can use to improve services to people of color with disabilities.
Issues are concerns that impact the daily living of people with disabilities and the functioning of agencies. These broad concerns need to be examined periodically by everyone so that the choices made are conscious, deliberate, and promote the best quality of life. Issues are the starting points of understanding differences and embracing different approaches to human problems. Access is a concept that addresses how people enter, use, and influence the delivery of disability services. Strategies are those specific actions that providers and people with disabilities can take to improve the quality of and satisfaction with services. People who concentrate on the development and maintenance of the infrastructure of disability services (policy makers, advocacy groups, legislators, service providers, regulatory agencies, etc.) will find much direction for how to move our systems towards inclusion for all people with disabilities. The target audiences are people with disabilities, with special attention to ethnic or racial issues, and providers who are in the business of developing and implementing disability service programs.
Without exception throughout this project, providers expressed the desire to provide quality services and make changes. People with disabilities wanted the assistance they need to live a full and productive life. But there are broad concerns that permeate how people give and receive services.
* People of color with disabilities face double discrimination. The discrimination may be directed at their racial ethnic group and/or their disabilities. This discrimination can be deliberate and conscious or unconscious as when the person is unaware of how their behavior was received.
* Lack of respect is an experience that people often had when they went for services. Two components of respect include (1) the control individuals and families have within the service sector and (2) being treated like a real person with feelings.
* Quality of services is an issue in many communities. Quality may be linked to the comprehensiveness of the services or dissatisfaction with services.
* Lack of services or lack of information of the services is a problem.
* Affordability of services or financial arrangements for services rendered is a problem for individuals with disabilities. The disproportionate number of ethnic minorities who are at or below the poverty level and who are also disabled have compounded financial stress. The amount of money within a household is a direct result of unemployment and has a profound impact on the quality of housing and ability to pay for medications. Eligibility criteria for services is a major concern.
* Language/communication barriers exist between providers and people with disabilities. Interpreters are not easily available, materials in print or other media in languages other than English are sparse, nor are TDD phone readily available.
* Transportation continues to be a vital link to disability services. Limited and varying degrees of quality of transportation continues to be a barrier to access.
* The lack of minority providers is a problem despite the impression that such providers would enhance services and increase the number of minorities receiving services.
* People with disabilities need to know their rights when receiving services. Not only is information about what is available important but knowing the rights of individuals and families within the service sector is equally important.
* Services for people with disabilities are fragmented. This fragmentation is fueled by the complexity of the service sector.
* Cultural competency has not been achieved within the disability service industry which includes the assessment, planning and delivery of services.
* Many people with disabilities who participated in this project feel disconnected from their communities. This lack of connection has three features: People do not feel they or their opinions are valued by service providers or public officials; they have little communication with their community; and there is a lack of information about what services are available.
* There is a paucity of information about the race or ethnic makeup of clients who receive services.
With the service sector moving toward outcome criteria and client satisfaction evaluation, it is reasonable to incorporate minority caseload numbers and issues relevant to ethnic groups in their geographical service area. Such information would provide benchmarks from which to measure progress.
Access to a broad array of services requires that people know what is available, can get to the services, use the services, have a method of payment, and that the environment of the service system promotes comfort and communication. There are five dimensions of access: availability, accessibility, accommodation, affordability, and acceptability. Throughout this project these concepts came through in the experiences and the issues people from various ethnic groups shared.
* Availability is the physical presence of services within the community.
* Accessibility refers to physical and structural access that is needed, as well as transportation to services or other necessary community facilities.
* Accommodation is the changes that the service system makes to meet individual or community needs.
* Affordability refers to the financial arrangements that facilitate the delivery of services without becoming financially prohibitive for the consumer.
* Acceptability is the “fit” between the provider and the consumer which embodies aspects of culture, attitude, and respect. Throughout this project, people expressed continued frustration that they were not viewed as human beings and that the service system was frustrating. People wanted to have a say in how they were treated and discuss options.
The following strategies are suggestions that can be implemented by people with disabilities and their families or by providers. These suggestions to improve services are organized to (1) empower people who use or need to use disability services and their families and (2) providers and other stakeholders, which includes, but is not limited to, legislators, advocates, policymakers, administrators, and staff. These strategies are listed with no ordering or prioritizing. These strategies were generated primarily from input from the Project's advisory committee meetings, participants at the 1997 Governor's Conference for People with Disabilities, suggestions written on the surveys, and phone conversations with people who contacted the Project. These suggestions were refined and augmented based upon the results of the qualitative and quantitative data analysis. Indiana has an opportunity to blaze new trails for people of color with disabilities, and since there is little to build on from other states, there are no constraints upon our collective creativity. These strategies are meant to encourage individuals and communities to think critically about what makes sense for improving disability services to people of color with disabilities.
Strategies for People with Disabilities or Their Caregivers
1. Ask providers for materials in your language.
2. Interpreters may be on staff. Ask for them or ask someone in your community who is familiar with the agency to help locate an interpreter.
3. Participate and review your community's need's assessments.
4. Push for laws that require employers to hire based upon the ethnic representation in your community.
5. Learn how to work the service delivery system. Advocacy groups, providers, other consumers, other providers, and community leaders can help develop programs to disseminate information about services.
6. Ask for a minority staff person or take a spokesperson when first making contact with an agency.
7. Share your wisdom and experience with others in your community and church. Develop support groups.
8. Inform your providers when you have a problem accessing services or facilities.
Strategies for Providers of Disability Services
1. Require and provide cultural competency experiences for administrators and staff. These may include, but are certainly not limited to, multicultural workshops, cultural experiences in ethnic communities, community awareness, and continuing education.
2. Develop ongoing recruitment strategies within the minority communities.
3. Use data about minorities and disabilities as part of the justification of agency budgets.
4. Establish or connect satellite programs with churches in ethnic minority communities.
5. Administrators of agencies should contact and maintain a relationship with key local leaders within the ethnic communities.
6. Use consumer satisfaction surveys that address minority issues and use that information in the evaluation of agency outcomes.
7. Write grants for the development of support groups and partner programs with churches. Statewide and federal grants are also encouraged.
8. Evaluate employees based on cultural competency outcomes.
9. Work from what consumers want. Actively include persons and their families in decisions about services.
10. Prepare consumers in how to “work” the service delivery system.
11. Help churches develop support groups.
12. Examine how services are advertized to ethnic communities.
13. Identify “gaps” in services and develop a system in the community on how to solve the problems.
14. Collect, compile and publish race/ethnicity caseload profiles.
15. Develop a public service/speakers bureau for the community for the purpose of educating consumers and politicians on services and needs.
16. Develop and use access assessments.
17. Examine agency policies and develop retention programs for minority staff that incorporate elements of flexibility.
18. Annually review the agency's/program's eligibility requirements with input from people of color with disabilities.
19. Develop medication assistance programs.
20. Develop job programs targeting people of color with disabilities.
21. Develop assistive/adaptive equipment grant programs.
22. A multilingual person should answer the “general” agency phone.
23. Evaluate case management services.
24. All print materials should be available in braille, audiotape, and major languages spoken in the community.
25. Improve access to TDD.
26. Incorporate minority participation on boards and have minority input on the development of agency policies.
27. Develop and implement an outreach program targeting ethnic communities.
28. Improve transportation.
29. Actively assist clients in finding necessary income resources.