My purpose in this paper is to describe the self-reported training needs and training information of advisors to self-advocacy groups for people with mental retardation. A telephone survey was administered to 118 advisors randomly selected, resulting in 90 completed surveys and a response rate of 76%. Major findings are reported in training topics, preferred training formats, hours and frequency of training, how training needs change, and differences in training needs based on advisor demographic data. The results can be used by individuals and groups to help better support the self-advocacy movement by assisting self-advocacy groups to better prepare and train individuals to be successful and useful advisors.
Self-advocacy is an important part of the civil rights movement of people with developmental disabilities (Cone, 1994). This civil rights movement focuses on the struggle for a life of quality in places and communities chosen by individuals with disabilities, for more and better services controlled by people with disabilities, and for greater social and political awareness in the disability community as a whole (Cone, 1997; Miller & Keys, 1996).
Advisors play an important role in the functioning of a self-advocacy group (Rhoades, Browning, & Thorin, 1986; Ward & Keith, 1996). Although self-advocacy groups are self-directed by the members (Shoultz, 1996), the loss of an advisor, especially during the early stages of group development, can slow the growth of the group or cause its dissolution (Browning, Thorin, & Rhoades, 1984; Brunk, 1987; Worrell, 1988a). Therefore, a deeper understanding of the training needs of advisors is important because it may help not only with the retention of advisors, but also with the development of the advisors' skills; this, in turn, will impact the growth and evolution of a self-advocacy group that is tied to not only the membership, but also to the skills of the group's advisor (Browning et al., 1984; People First of Washington, 1995a; Rhoades et al., 1986). In fact, when a national steering committee delivered their proposal for forming a national self-advocacy organization, one of the goals under Recommendation 4 included more and better training of advisors (Hayden & Shoultz, 1991). Ward and Keith (1996) made the point that providing some type of orientation or training for the advisor may be necessary and important. Information on advisor training needs would help self-advocacy groups and professionals in the disability field to identify and develop training curriculums, preservice and inservice training, and technical assistance opportunities for advisors.
Although duties and areas of competence are agreed upon in the self-advocacy literature (Beckwith, 1994; Curtis, 1984; Hanna, 1978; Kennedy, 1995; People First of Washington & Self-Advocacy Project, 1985; Woodyard, 1980a; Worrell, 1988), there has been no action taken to ascertain self-reported training needs of the advisors, to look at training currently received by advisors, to look at previous training experiences, or to describe any developments in training geared toward the training needs of advisors.
Several authors have identified characteristics of advisors (e.g., Beckwith, 1994; Curtis, 1984; Speaking for Ourselves, 1993; Williams & Shoultz, 1982; Woodyard, 1980). However, these characteristics have never been related to advisor training needs. Finally, no researcher in the field of developmental disabilities has addressed the specific advisor training needs that might be tied to specific stages of group development.
Information in these areas have significant implications for self-advocacy groups, not the least of which would be to aid in the recruitment and retention of self-advocacy group advisors and support people. This lack of information may prove to be a critical problem due to (a) the rapid growth of the self-advocacy movement, (b) a common concern among advisors that they are inadequately performing their role, and (c) difficulties with turnover and burnout among advisors (Beckwith, 1994; Browning et al., 1984; Brunk, 1987; People First of Washington & Self-Advocacy Project, 1985; Rhoades et al., 1986; Woodyard, 1980; Worrell, 1988a).
My purpose in this article is to identify self-reported training needs and training information from current advisors to self-advocacy groups across the nation. Specifically, the following research questions are addressed What are the most critical advisor self-reported training needs? How do the major advisor training needs change as a group develops? What is the relationship between advisors' demographic characteristics, educational level, and final stage of group development and their self-reported training needs?
There is no self-advocacy group literature that directly addresses the training issues of advisors to self-advocacy groups. However, training needs can be surmised by examining other areas of the self-advocacy movement literature. For example, Curtis (1984), Williams and Shoultz (1982), and Woodyard (1980) listed several competencies an advisor should possess: (a) knowledge of and skill in facilitating group process; (b) being a skilled trainer; (c) knowledge of, belief in, and commitment to self-advocacy; (d) skill in accessing community resources; (e) knowledge of both political and service systems; (f) proficiency in problem solving/conflict resolution techniques, generating alternatives, and developing action plans; and (g) grant writing abilities. All of these competencies suggest potential areas of needed training.
In addition, the self-advocacy literature describes over 30 advisor functions (Curtis, 1984; Norsman, 1984; Rhoades et al., 1986; Speaking for Ourselves, 1993; Williams & Shoultz, 1982). Largely, these functions fall into the broad categories of (a) providing training on various topics to self-advocacy group members, (b) group formation/organization/planning, (d) writing/editing, (e) problem research/solving, (f) evaluation, (g) counseling, (h) arranging transportation, (i) long range planning, (j) conflict resolution and generating alternatives, and (k) community connecting. Each of these 10 areas suggests fertile ground for advisor training opportunities.
As part of An Advisors Guidebook for Self-Advocacy, Woodyard (1980) included the results of a mailed survey to advisors that he had conducted in 1979. The research design was not optimal. For example, the sample size was 7; there was no explanation of how the sample was selected; and no information was provided regarding instrument development, data analysis, or the steps taken to allow the information to be generalized to the larger self-advocacy movement. However, Woodyard (1980) did provide information on the major needs faced by advisors. In that list he acknowledged the need for inservice training for advisors but offered no other information or direction.
After reviewing the self-advocacy literature, I found it clear that minimal effort has been devoted to examining the training needs and issues of advisors. Therefore, little use of this type of information has been made in recruitment and retention of advisors. Looking at the literature currently available on the self-advocacy movement, I noted several weaknesses that made this current study necessary: (a) most of the published materials available are not research-based, but are descriptive in nature (i.e., based on written accounts of the experiences of people involved with the self-advocacy movement); (b) the focus has been on advisor roles, functions, competencies, and characteristics; and (c) no researchers have attempted to uncover the types of training that advisors believe they need to do their job. The research described in this article fills the gap by providing quantitative data that describes critical advisor training needs, how best to deliver this training, and the relation of certain advisor characteristics and stages of group development to training needs.
A detailed description of the methodology used for this research can be found in Cone (1999).
Population and Sample
The population targeted was advisors to the 468 self-advocacy groups identified in Longhurst (1994). Individuals identified as serving in the position of the advisor to a self-advocacy group comprised of individuals with a primary disability label of mental retardation were the target sample. That was the only criteria for participation. Of the possible 468 advisors, a 25% sample was drawn, resulting in a sample of 118.
A preinterview telephone call was made for the purpose of introduction and assessing willingness to participate. During this call if the advisor indicated that the majority of group members did not have a primary disability label of mental retardation, that advisor was not interviewed for the study, and a new name was randomly selected.
The probability sampling procedure of a proportional random sample stratified by regions with substitution was used (McMillan, 1996; McMillan & Schumacher, 1993). Nine regional cells, based on the regions established by Self Advocates Becoming Empowered were used. Table 1 contains a listing of the regions and the states within regions.
A telephone survey instrument and an interview protocol were developed and employed to gather information on advisors to self-advocacy groups. There were three primary steps to developing the survey: item generation, expert panel review, and pilot testing. The Self-Advocacy Group Advisor Survey is a five-part telephone survey through which information is gathered in the following five areas: Job of Advisor, Advisor Demographic Data, Group Development and Activities, Advisor Self-Reported Training Needs, and Self-Advocacy Group Demographic Data. Each section consists of open-ended questions, check of questions, item-completion questions, items requiring a yes or no response, forced-choice questions, and Likert-type questions.
Interviewer selection and training
In addition to the researcher, one interviewer was selected to administer the survey. The researcher provided training to the interviewer on the background of the study, the survey instrument, and data-collection procedures for both respondents and nonrespondents.
Interrater reliability was addressed in two ways: (a) The researcher and the interviewer were in two different rooms, but simultaneously listened to respondents during the pilot test and marked answers on the survey as the interview was being conducted, and (b) the researcher and interviewer each developed post hoc coding categories from the completed interviews.
Interrater reliability data were collected during the pilot test. The researcher and the interviewer used the same data-collection system (i.e., the survey). The level of agreement between the two was calculated by dividing the number of agreements on the marked and completed surveys by the total number of agreements plus disagreements and multiplying by 100. Interrater reliability ranged from 88% to 97% (M = 95%).
With regard to the post hoc coding categories, the researcher and interviewer each developed post hoc coding categories from 20 completed interviews and then compared categories. The interviewer had five post hoc coding categories labeled differently. The researcher and interviewer then discussed any discrepancies until there was agreement on how to label the categories. Subsequently, 5 more completed surveys were coded by the interviewer and researcher separately using the newly agreed upon coding categories. When that coding was compared, no differences were found.
Internal consistency was addressed with the Likert-type questions in the Advisor Self-Reported Training Needs section. For the advisors' 33 self-reported training needs, five subscales were created: Personal Skills Development, Program Issues, Group Development Issues, Current Topical Issues, and Legislative and Social Issues. Cronbach alpha computation for the interitem consistency produced coefficients of .83, .71, .78, .81, and .76 for each index, respectively. This indicated good to excellent interitem consistency. Therefore, these five indices comprise the Advisor Self-Reported Training Needs Index. The sample size for this analysis was 90.
In addition, a mean Advisor Self-Reported Training Needs Index score was computed for each respondent by summing the scores for the 33 individual items and then computing a mean score. No recoding occurred because all the statements were in one direction. The observed range for mean Index scores for each Index were as follows: (a) Personal Skills Development, 2.47 to 3.67; (b) Program Design, 2.08 to 2.76; (c) Group Development Issues, 2.56 to 3.28; (d) Current Topical Issues, 2.53 to 3.31; and (e) Legislative and Social Issues, 2.96 to 3.28.
Due to time constraints during the data-collection period of this study, reliability analyses were conducted during the pilot phase and the post hoc coding phase, but not during the data-collection phase. This is a limitation of the study.
Descriptive statistics were computed on several training needs variables. The relationship between advisor problems and advisor self-reported training needs was examined through an open-ended question during the telephone survey, and the data were reported using frequencies and percentages. In addition, relationships between advisor gender, age, and educational level and advisor self-reported training needs were examined using a series of analyses of variance (ANOVAs). I examined the relationship between final stage of self-advocacy group development and advisor self-reported training needs by computing a series of analyses of variance that compared the final stage of self-advocacy group development (five levels) with all five indices of the Advisor Self-Reported Training Needs Index.
Several methodological considerations should be identified that may restrict the generalization of this study. The study involved only self-advocacy groups made up of people with the primary disability of mental retardation, and generalizations to advisors of groups whose members have a differing primary disability should be made with caution. There were limitations to internal validity (e.g., the length of the interviews, possible researcher bias because the researcher was the primary interviewer, and the open-ended questions). Categorization of variables is a subjective process, and it is possible that the results would be affected if categorizations were altered. This study involved only groups listed in the Longhurst (1994) Self-Advocacy Group Directory and generalizations to other directories should be done with caution. Only advisors with a working phone number were eligible to participate, necessitating substitutions. There are limitations inherent in telephone research (i.e., difficulty in scheduling interviews, interviewer characteristics affecting responses, difficulty with asking questions on sensitive subjects, and answers being affected by social desirability). Finally, for these training areas, investigation with a larger sample is encouraged.
A total of 90 individuals agreed to participate in the full telephone interview. Twenty-eight individuals declined to participate in the full interview and instead agreed to complete the nonrespondent form. This resulted in a response rate of 76.3%.
Nonrespondent information and characteristics
The nonresponse rate was 23.7%. In order to assess the differences between the respondents and nonrespondents, I ran a series of chi squares and t tests on the following variables: gender, ethnic heritage, age, marital status, disability, educational level, where self-advocates lived (rural, urban, or suburban setting), current employment position, voluntary versus paid advisor position, employer, group age, group size, settings in which group met. There were significant differences between nonrespondents and respondents on the variables of age and education, ps < .01. Results of the analyses indicated that nonrespondents were younger and less educated. These are further limitations of the study.
Advisor Demographic Information
Information regarding the demographics of advisors to self-advocacy groups is discussed in Cone (1999). However, a brief summary of that data indicates that, predominantly, advisors were married, white females at two times the rate of males. Advisors were older, with 63.4% being over 41 years of age and tended to live in urban settings. They were well-educated, with 85.6% having at least a bachelor's degree, and 48.9% having completed some amount of higher-level graduate work. Finally, 10 advisors reported being members of an ethnic minority (11%), and 9 reported having a disability (9.9%).
Advisor Self-Reported Training Needs, Issues, and Information
Information summarizing the most critical self-reported training needs of advisors to self-advocacy groups are listed in Table 2 in order of importance. These training topics fall into the broader training categories of personal development issues, group development issues, current topical issues, and legislative and social issues.
Advisors were also asked to identify any additional topics on which they would like to receive training. The topics they identified were family-centered planning, how disability affects the family unit, time management, history of the disability rights movement, training on the job of the advisor, and volunteerism.
Preferred training formats
While a list was read over the phone, all 90 respondents were asked to indicate which training formats they found useful for learning. That information is summarized in Table 3 in order of importance. Advisors seem to prefer active versus passive training formats (i.e., they need to be engaged in the learning process).
Frequency of training
Advisors were asked how often they received formal training on self-advocacy topics. Their responses were once a week (1.1%), once a month (4.4%), once a quarter (14.4%), twice a year (27.85%), once a year (30.0%), and never (21.1.%). Advisors were also asked how often they received formal training on disability topics. Their responses were once a week (3.3%), once a month (14.4%), once a quarter (35.6), twice a year (25.6%), once a year (12.2%), and never (7.8%).
Advisors received twice as much formal training on disability topics versus self-advocacy topics within the category of once a quarter. Likewise, they were more than twice as likely to receive training on self-advocacy topics once a year as they were to receive training on disability topics once a year. Functionally, advisors received training more often on disability-related topics versus self-advocacy.
Number of hours of training
Advisors were asked to estimate the number of hours of training per year, formal and informal, that they received on self-advocacy and on disability topics. This information is summarized in Table 4. Advisors are not participating in an inordinate amount of training in either self-advocacy or disability issues. Within both the self-advocacy and disability arenas, most advisors reported participating in 10 or fewer hours of formal or informal training per year.
Advisor Training Needs Changing Over Time
Forty-four of the 90 advisors (48.3%) indicated that their training needs had changed over time. Their answers are summarized in Table 5. Initially, the training needs of an advisor focus on internal group needs and issues, such as the needs of individual group members, what is self-advocacy, and how to develop and facilitate a self-advocacy group. The self-advocacy group then begins to focus on issues external to the self-advocacy group, so the advisor's training needs refocus on innovations, technology, and political and systems change-oriented issues.
Anecdotally, advisors noted that training needs are greatly affected by new members, changing leadership, and changing group issues. The respondents indicated that times and philosophies change, which in turn changes what the group wants to take action on, which in turn changes the advisors' training needs and activities. For example, when the Americans With Disability Act (ADA) was passed, advisors reported that members of the self-advocacy group wanted to know what it meant for them (i.e., what were their rights and what did it mean for living their lives?). Therefore, advisors needed to be able to provide the group with this type of information, which impacted the type of training the advisors wanted.
Advisor Demographics and Self-Reported Training Needs
In order to examine the relationships between a series of key variables and advisor self-reported training needs, I used the Advisor Self-Reported Training Needs Index. No significant difference was found between gender and the Advisor Self-Reported Training Needs Index, which has five indices, nor was a significant difference found between the four levels of education and any of the five indices of the Advisor Self-Reported Training Needs Index.
The relationship between advisor self-reported training needs and advisor age was tested by using a series of one by four ANOVA computations. Age was a forced-choice question asked during the telephone interview. There were four possible levels for the independent variable: 20 to 30 years of age, 31 to 40 years of age, 41 to 50 years of age, and over 50 years of age. The sample size for this computation was 90. There was no significant difference between advisor age and personal development skills or between advisor age and program issues (Indexes 1 and 3 of the Advisor Self-Reported Training Needs Index, respectively).
A significant difference was found between the four levels of advisor age and group development issues. Specifically, individuals who were 20 to 30 years of age had more concerns with self-advocacy group development than did individuals who were over 51 years of age, F(3) = 3.55, p < .02. Group development issues included fundraising, developing a budget, finding and writing grants, the political process, use of the media and public relations, understanding group process and facilitation, basic information on self-advocacy, and how to recruit group members.
A significant difference was found between the four levels of advisor age and current topical issues, Index 4 of the Advisor Self-Reported Training Needs Index. Specifically, individuals who were 20 to 30 years of age responded that they had significantly more current topical training concerns than did individuals who were 41 to 50 or who were over 51 years of age, F(3) = 35, p < .02. The current topical issues included legal rights, guardianship issues, sexuality, supported employment, home ownership, managed care, welfare reform, Medicaid reform, SSI, use of the Internet, and assistive technology issues.
A significant difference was found between the four levels of advisor age and legislative and social issues, Index 5 of the Advisor Self-Reported Training Needs Index. Specifically, individuals who were 20 to 30 years of age indicated that they had greater legislative and social issues training needs than did individuals who were 41 to 50 years of age or who were over 51 years of age, F(3) = 4.24, p < .007. The legislative and social issues included the ADA, the IDEA, the Vocational Rehabilitation Act, human rights, and nonviolent protest/direct action.
Advisor Problems and Self-Reported Training Needs
Twenty-six advisors responded yes (28.9%) when asked whether the problems they experienced as an advisor were related to their training needs. Sixteen advisors (61.5%) responded that their problems with their job stemmed from needing training on topical areas with which the self-advocacy group was dealing. Seven of the 26 respondents stated that their problems as advisor were directly tied to needing training on the job of advisor and on self-advocacy. The remaining 3 advisors (11.5%) reported that their problems were related to the fact that there was not enough time for training and that better training techniques needed to be used.
The respondents did not indicate that they had very critical training needs, perhaps because they knew the likelihood of receiving the training or being allowed the time for the training was very low. In addition, respondents most often received training in the areas in which they were employed and, therefore, felt “well enough” trained in their service delivery niche. Further, a lack of critical training needs reported in the area of self-advocacy may have occurred because advisors did not have reason to believe that there would be any employer effort or funds dedicated to self-advocacy training efforts.
Although preservice and inservice trainers recognize the use of computer technology for developing training opportunities, it remains a fairly inaccessible and unused format among advisors. The most preferred training formats for advisors included those that either do not require the individual to leave their workplace (e.g., on-the-job training, role-playing, videotape training) or are traditionally accepted types of training formats (e.g., conferences, workshops, site visit, internship). Unfortunately, computer-based training, and CD-ROM training finished in the lower half of the list. Cutting edge technologies were not readily available or used by the respondents in this research project.
Anecdotally, many advisors mentioned that any training format that was interactive was preferred. This is supported by the data in this research project, as evidenced by the fact that the least interactive training formats (e.g., self-study course, classroom training, reading books and articles, and lecture) all finished in the bottom half of the list of preferred training formats.
When advisors were asked how often they received formal training on self-advocacy issues or topics, one fifth reported having never received formal training. This indicates that a rather substantial group of advisors are not making use of self-advocacy presentations at self-advocacy, advocacy, and professional conferences, most likely because they and/or their agency cannot afford to send them to such training opportunities. Also, it may indicate that although individuals are employed in jobs that include the duties of advisor, employing agencies do not see any importance or benefit to emphasizing self-advocacy training (i.e., being the self-advocacy-group advisor is viewed as the least essential job duty and, therefore, the least job training is provided for it). Finally, this funding response indicates a lack of formal training opportunities in the area of self-advocacy. Instead, individuals opt for no training or to pursue informal training opportunities (e.g., reading People First literature, talking to other advisors).
In this study I found that younger advisors, those 30 and under, have a greater need for information and training in the broad areas of self-advocacy group development, current disability issues, changing technologies (e.g., Medicaid reform, the move toward managed care, assistive technology innovations), federal legislation, and human rights issues than do their older counterparts. The younger advisors have more questions about supporting a self-advocacy group and are often not comfortable with the skills and knowledge they have to fulfill their advisor role. This is not surprising given that advisors have little preparation for fulfilling the duties of an advisor (Cone, 1999).
The data and anecdotal information in this study indicate that because of time, financial, and interest issues, training opportunities for advisors need to be time-sensitive, inexpensive, and interactive. Training development should focus on formats such as on-the-job-training, site visits, conference/workshops, role-playing, video packages, and internships. This is especially true of advisors who are paid by service provider agencies because the data in this study have shown that the employing agency is not inclined to participate in training opportunities that are time-consuming and expensive. Further, because of the ever-evolving nature of the advisors' training needs, training opportunities for advisors also need to be flexible in content and focus.
Organizations supplying training opportunities should consider developing curricula with input from a diverse group of people. Individuals from different ethnic, cultural, religious, and disability backgrounds must be sought as trainers and as participants in training. This outreach is necessary in order to ultimately supply self-advocacy groups with new perspectives and experience by enriching training and technical assistance opportunities with diverse input and feedback.
In general, the frequency of training devoted to self-advocacy needs to increase, especially in situations where the job of advisor is just one of many of the person's job duties. In this type of situation, employers (who are usually direct-service providers) should develop a training plan for the employee that includes receiving training on self-advocacy as well as training on the other areas of the person's job.
Training efforts need to be focused not only on new advisors, but also on young advisors, even if a relatively young advisor has been advising for a year or more. The young and the new advisors have concerns about their knowledge base and skills necessary to perform their advisor duties. Do not assume that greater length of time equates with higher comfort levels with regard to job performance. Age really seems to be the predictor, not length of time as advisor.
Pre- and inservice training with a focus on self-advocacy should include, at a minimum, the history of self-advocacy, both internationally and in the United States; the philosophy, values, and goals of the self-advocacy movement; how to help form a self-advocacy group and how to support it during the critical initial stages of development; developing leadership skills; and the duties and expectations of people who agree to be self-advocacy group support people. The key is to collaborate with local self-advocacy groups in both the design of the content of this curriculum or training and in the presentation of the material.
In order to ensure the autonomy of self-advocacy groups when they are sponsored by service providers, members of the group have to play a primary role in training their advisor. The group members must help develop and direct the training the new advisor will undergo in order to be ready to properly support the self-advocacy group.
If the recruitment of advisors were to be “privatized” (i.e., individuals recruited and hired from outside the disability field), then individuals would be coming into the position of advisor with little to no knowledge of disability, service provision, or even the self-advocacy movement. They will need training about the self-advocacy movement and about self-advocacy groups. Therefore, introductory self-advocacy training would be necessary and that presents an intriguing opportunity for agencies such as governors' planning councils on developmental disabilities and university affiliated projects to provide funding or to collaborate with self-advocacy groups to train new and current advisors to self-advocacy groups. With funding, training opportunities and training curricula for advisors could be developed. This would be a chance for self-advocacy groups to build capacity and create a cadre of trained individuals from which to draw support.
The results of this study raise interesting questions that warrant future investigation. First, it has to be clear that this research represents only one piece of the puzzle for fully understanding advisors and self-advocacy groups. To truly understand the advisor component of the self-advocacy movement, both leaders (e.g., officers) and members of self-advocacy groups would need to be interviewed, and data representing their perspectives collected. Second, future researchers should also expand the type of sample sought. In other words, interviewing leaders, members, and advisors to self-advocacy groups made up of members with primary disabilities (which include physical disabilities, mental health issues, and other disability categories) would provide a greater understanding of advisors and self-advocacy groups. Third, future research must be focused on providing advisors with the training they require and in the formats they have indicated would be useful and then evaluating that training. Fourth, the absence of significant relationships between gender and educational level and self-reported training needs should not negate further investigation in these areas and other areas, such as the relationships between advisor role and activities and training needs.
The author thanks Donna DeStefano, Catherine Goodwin, and Carolyn Griffith for their assistance with the preparation of this manuscript. Reprint requests should be sent to the author at 331 Mountain High Dr., Antioch, TN 37013.