The Family Support Opportunities program in the state of Washington has a unique component. People with extensive knowledge of local communities, referred to as community guides, were made available to all families enrolled in the program. Community guides assisted families by seeking information about community resources that families needed and helping families connect to those resources. Responses from a survey of 312 families were analyzed to determine the impact of the community guides' services. Results suggest that when families indicated satisfaction with their community guides, they reported better outcomes in terms of their needs being met, satisfaction with Family Support Opportunities, and connections to their local communities.
Editor in charge: Steven J. Taylor
The growth in family support programs throughout the United States has been well-documented (Agosta, 1992; Bradley, 1992; Knoll et al, 1992). By 1992, all but one state had a program whose identified purpose was to support families with children (including adult children in certain circumstances) with developmental disabilities living at home. The range of services in those programs is extensive. Some offer programs such as counseling, respite care, and in-home support, whereas others offer cash subsidies. Still others provide families with vouchers or reimbursement for allowable expenses. Many offer a combination of programs, including some form of financial support.
Family support programs are based on the premise that families want and need informed access to generic and community services, including information services. The role of such programs is to identify family needs and locate formal and informal resources that support those needs while assisting families to mobilize their own resources. This may include gaining new skills while capitalizing on existing capabilities (Dunst, Trivette, & Deal, 1988, 1994). Although some programs do provide cash subsidies, the emphasis typically is on helping families connect to existing community resources and using those resources appropriately (Dunst et al., 1994; Taylor, Knoll, Lehr, & Walker, 1989). Family support workers act as advocates in helping families make maximum use of community resources, such as recreation programs, medical and dental services, public transportation, and other generic services (Taylor, 1987). They also assist with periodic consultation and education in choosing and using services appropriately when they perceive the need (Agosta, 1989).
Informed access is key to the success of family support programs. Families do indeed report that information is their greatest need. Information was reported to be the single greatest need by 312 families surveyed in one study (Richardson, Romer, Aigbe, & Porter, 1999). In another, 97% of 107 families interviewed reported they did not receive adequate information, noting a specific lack of information about respite care, cited by 78% as a significant need (Slooper & Turner, 1992). Stallard and Lenton (1992) interviewed 41 families, with more than 50% reporting that they received inadequate information about respite care, which they also cited as a high service need.
Evaluation studies conducted in Iowa, Illinois, and Michigan confirm the importance of information as a key element of successful family support initiatives. Families do have important resource needs and respond well to the availability of cash vouchers or subsidies, but they also emphasize the value of advice and assistance in negotiating service systems and actually obtaining services regardless of the level of resource availability (Agosta, 1992; Herman, 1994). In fact, according to Herman, evaluators in Michigan cautioned against an overreliance on cash payments, emphasizing the need to integrate cash payments within the totality of community family support services. Too much emphasis on cash subsidies without assisting families to effectively mobilize and use resources may result in a failure to support families in their most difficult task: finding and securing services and supports from multiple, uncoordinated service systems.
This report focuses on an innovative initiative that was intended to substantially enhance the ability of families to easily obtain information and make effective use of community service options, emphasizing generic services and supports. Called the Community Guide Initiative, the program is one of five elements of the State of Washington's Family Support Opportunities program. A community guide is a person with extensive knowledge of local community resources who offers his or her expertise to families enrolled in the program. The other four components of the Family Support Opportunities program are case management, assistance with payments for medical and dental services, in-home support for the person with disabilities for activities of daily living, and short-term cash assistance at the rate of $1,200 per annum for approved expenses. The study reported here is based on an evaluation of the entire Family Support Opportunities program, but the results reported emphasize the Community Guide Initiative.
The aim of the Family Support Opportunities program is to assist families to fully utilize all resources available to them, including generic community supports. An important feature of this program is the community guide, whose role is to provide information about available community resources and help families gain access, with the ultimate aim of helping them develop better connections to their local communities.
Each of six regions in the State of Washington have responsibility for recruiting and training community guides for families in their region. Recruitment is delegated to at least one case manager in the regions, with one region choosing to contract for its recruitment from a parent support agency. Recruitment is typically done through word-of-mouth and some advertising in newsletters and brochures and ads placed on bulletin boards. The focus is on reaching people who have knowledge of their communities and sensitivity toward disability issues. Organizations such as parent-to-parent support groups, church groups, civic organizations, and schools are all considered prime recruiting territories. Recruiters seek people who see the capacity of other people, have a sense of social justice, are resourceful and energetic, have good people skills, are observant and assertive, are responsible, and have a positive self-image.
Upon being recruited as community guides, individuals were trained by personnel from the state's Division of Developmental Disabilities. The topics included listening to families, reflective planning with families, confidentiality, mapping community resources, locating natural supports in the community, helping families help themselves, and understanding how community guiding fits in the Family Support Opportunity program. Training sessions were approximately a day in length and included some lecture, discussion, and large and small group activities that illustrated the major topics of training. Once training was completed, community guides were offered opportunities to meet with each other and facilitators to continue developing their understanding of community guiding and sharing resources.
Many community guides are themselves parents of children with disabilities and/or professionals working in other ways with people who have disabilities. Some are people who have volunteered in disability-related programs. Each community guide is paid up to $200 per year per assigned family. In addition, the family is allocated $1,200 for expenditures, some, or all, of which may be used to fund participation in resources identified by community guides.
Once the family and community guide have made contact, they work together to develop objectives aimed at meeting specific family needs. Next, the community guide begins to seek out natural and community supports that will help the family meet the agreed upon objectives.
In order to assess the Family Support Opportunities program, including the Community Guide Initiative, staff from the University of Washington's Center for Disability Policy and Research conducted an evaluation. Every family that had participated in the Family Support Opportunities program for at least 6 months at the start of the study was included. The evaluation began in January 1999; a mail survey and in-person interviews were used.
A mail survey was devised for use with the 1,233 families meeting the enrollment criteria. This survey was developed based on the results of an earlier pilot study of the Family Support Opportunities program. The survey contained 31 questions with response options. Families were asked about their needs for services and supports, how effective the help provided by Family Support Opportunities was, and the impact of Family Support Opportunities on families. Additional questions specific to each area of the program were included. Questions about community guides included family satisfaction with the guides, the behavior engaged in by the community guides, and what resources the guides connected them with. Of the 1,233 families who received a letter informing them about the study, 128 declined to participate and 42 introductory letters were returned as undeliverable. The survey was mailed to the remaining 1,053 families and a follow-up letter was mailed 2 weeks later. A total of 312 families returned completed, usable surveys, for a response rate of 30%.
An interview guide was developed for use as a follow-up to survey responses. Questions were open-ended and intended to elicit descriptive information about families' community guide experiences. Examples of topics addressed by the questions included characteristics of guides, explanation given for role of guide, what makes the experience of working with a community guide “good” or “bad,” the difference between an “average” and a “great” community guide. The interviews ranged from 30 to 120 minutes, with an average length of 75 minutes. All interviews with families were conducted in person in the families' homes. Interviewers were trained at the Center for Disability Policy and Research and were either permanent staff members of the Center or graduate students in public policy or social work.
Of the 312 families who responded to the survey, 165 indicated that they used a community guide. From among those respondents, 117 families agreed to an interview. Fifty-three interviews were completed. Unfortunately, resource limitations and time constraints did not allow for interviews to be completed with all families who agreed to them. The 53 families who were interviewed were selected to represent the geographical regions of the state but were otherwise chosen randomly.
Interviews were analyzed separately by the first and third authors, who reviewed the field notes of each interview to identify those themes expressed by family members. Each author developed a list of major themes with specific quotations from families illustrating those themes. Both authors then met to discuss the themes they had identified independently and sought to arrive at agreement on the final list of themes. Other then the condensation of some themes and agreeing on language to refer to the themes, both authors consistently identified the same issues as ones raised by families.
The characteristics of the sample as compared to the population from which it was drawn led us to conclude that there were no serious biases in the sample. Responses from families were analyzed independently. Themes were then extracted based on commonly recurring responses.
Responses to the Mailed Surveys
Figure 1 displays the distribution of satisfaction across those families who reported using a community guide. The level of satisfaction averaged 3.93 on a 6-point scale although it is instructive to note that 26% (n = 41) rated their experience as very dissatisfying, while 44% (n = 70) reported being very satisfied, suggesting that people either had a very positive or fairly negative experience.
A further analysis was conducted based on the families who reported high (mean = 5.55) and low (mean = 1.41) satisfaction, contrasting them with families who did not use a community guide. This was done in order to (a) determine the possible factors affecting community guide performance and (b) assess the reasons for satisfaction by families who reported the most positive community guide experiences. Comparisons of the characteristics of the three groups are depicted in Table 1.
The next four tables compare the responses of families in the high-satisfaction group with those in the low-satisfaction group. The success of a community guide in making resource connections is an important factor when comparing the two groups. More than 50% of the families dissatisfied with their community guides reported that the guides failed to connect them to any supports or resources in their communities.
High-satisfaction families reported feeling better able to care for their family members with a disability and that their family's circumstances were better understood. The results of chi-square analyses indicated that those families who reported a satisfactory community guide experience also reported a statistically higher rate of increased emotional or physical well-being, that their circumstances were understood by Family Support Opportunities, and that they were better connected to their communities.
Satisfaction with community guides is an indicator of satisfaction with the overall Family Support Opportunities program. High satisfaction families also reported greater satisfaction with the Family Support Opportunities program as a whole than did the low satisfaction families. Moreover, those families with no community guide experience rated their satisfaction with the Family Support Opportunities program as a whole higher than did those families who were dissatisfied with their community guide experience, suggesting that a poorly performing community guide is worse then no community guide at all.
Table 5 presents the results of the one-way analysis of variance conducted on the outcomes of specific areas as rated by families. As can be seen in this table, all areas showed a significant difference between groups of families, with the exception of the outcome related to out-of-home respite care.
Table 6 indicates the extent to which families encountered difficulty in finding providers for in-home care and respite care. The table shows that families satisfied with their community guide had less trouble finding providers than did families dissatisfied with their community guide. However, there was essentially no difference between families satisfied with their community guide and those families not using a community guide. Although there was no difference between these two groups in their ratings of difficulty in finding providers, Table 4 clearly shows that families satisfied with their community guide were also more satisfied with assistance finding providers. Table 5 also shows a difference in those two groups with respect to their needs being met for in-home support. Apparently, those families satisfied with their community guide encountered as much difficulty finding providers as those families not using a community guide, but their needs for those services were better met, and they were more satisfied with that aspect of the Family Support Opportunities program.
In order to understand better what might be contributing to families' ratings of their community guides, we examined their responses to seven survey questions related to behaviors engaged in by community guides. Table 7 presents the summaries of those responses and suggests that those community guides with whom families reported satisfactory experiences were more likely to engage in all of the listed behaviors. In fact, in all instances, families rated the satisfactory community guides at least 2 points higher on a 6-point scale, and sometimes even 3 points higher. Satisfactory community guides appear more likely to engage in a wide range of behaviors.
A good community guide can contribute to outcomes that are far superior to those achieved with a poor community guide and usually better then those achieved by families who did not use a community guide. Also, good community guides engaged in a range of behaviors in support of families, including listening to families needs; displaying knowledge of community resources, in general, as well as specific disability issues; helping to solve problems; and assisting in locating service providers. Questions remain, however, as to what factors caused a satisfactory versus unsatisfactory community guide experience. In order to address those issues, we turn to the interviews conducted with families.
Families interviewed for this study seemed to have either a very clear idea of the role of the community guide or had no idea what to expect. Some families reported that the role of the community guide was explained as someone to do legwork, research, gather information, and brainstorm. Community guides were considered “someone to help find resources and access things I need” and “a liaison to the community.” Other families reported not knowing what to expect from the community guide. One family thought that the community guide was “a book until my case manager told me a community guide would be calling me.” Interestingly, many families who reported that their understanding of the community guide's role had changed over time did not have a clear expectation or definition of the community guide at the beginning of their experience.
In describing their experiences with a community guide, families clearly separated into two categories: those who were satisfied and those who were unsatisfied with their community guide experience. The families reporting a positive experience described their guides as being able to provide accurate information quickly, to hear and understand the family and their needs, and to let the families decide their own needs. These guides were also described as “sincere,” “knowledgeable,” and “pleasant.” When a family had a negative experience, the guides were most often described as having a lot of other things going on, being rushed, and providing inappropriate information for the families.
The characteristics of the actual experiences were also different for the two groups of families. Families who were satisfied with their community guides tended to have an experience in which they met the community guide in person at least once, there was a rapid turn around of information on resources, and there was a clear focus with clearly defined needs. The relationship was short-term and temporary, information was provided instead of services being delivered, and the community guide took the initiative in communicating with the family. Comments from satisfied families included,
She understood what we were asking for.
She was very knowledgeable about what she was talking about.
She provided the information we needed.
It was not any different from what I would have done. It's just something I could check off my list of things I would have to do.
In contrast, those families who were less satisfied with their community guide tended to have an experience in which there was a lack of follow-through, all communication was over the phone, and the role of the guide was unclear. Comments from families describing a negative experience include:
She never located any resources for us.
I didn't really know what I could ask of her.
She didn't respond to me when I called and needed additional help.
Other goals and needs surfaced, but she never responded to my phone calls.
Overall, families who described their community guides as being clear about their role and their boundaries and as being able to understand what the families needed were the families who got things accomplished or, at the very least, viewed their community guide experience positively.
Due to the use of a nonexperimental evaluation design, we were concerned that because families self-selected to use the community guide, they might have achieved the same outcomes without the guide. Although we cannot rule out this alternative, we can add one piece of information from families that might help clarify this issue. Upon analyzing the results, we wondered how families might have responded had we asked them whether they felt the community guide was instrumental in achieving the outcomes they indicated in their survey responses. Unfortunately, we did not foresee the need to ask this question at the time of the survey. We did, however, examine the interviews of the families who indicated that they had a good community guide experience. We looked for any statements that might have been made indicating that the families felt the community guide was the major reason they were able to achieve outcomes. There were 15 families interviewed who indicated that their community guide experience was either a 5 or 6 on the 6-point scale.
In 5 of those interviews, families made statements that we interpreted as demonstrating the family felt the community guide was a major contributor to the outcomes they achieved. One family described how their community guide found them a respite care provider and arranged for additional hours through the Division of Developmental Disabilities, saying “I didn't know this was even possible. It was great she was able to do it.” Another family needed a wheelchair ramp built at their house. The community guide sought out information and secured a commitment from a local resource to build the ramp. The family's comment was, “We would not have otherwise gotten this done. We were too uncomfortable asking for money.” A different family told us how their community guide helped them locate resources for day care: “She knew the community better than us. Our family being so overwhelmed we were not even able to look. She did the legwork for us which was just too hard for us to do at that time.” Another family explained how a community guide helped them locate respite care and other community recreational resources for their daughter. “I wouldn't have had the time or energy to do that kind of research on my own.” Finally, a family told us about their community guide's assistance in finding summer camp and recreational opportunities.
We had more services then we could have ever got because of her knowledge. She had the knowledge and experiences and network to meet my child's needs. Without my guide I'm sure I would not have gotten the services that I have now.
In 5 other interviews families made comments that suggested a relationship between their community guide and their outcomes but did not explicitly draw this connection. These comments included:
She got us resources a lot quicker then we could have done.
She knew exactly who to contact and what to do and we didn't have to take the time to do it.
Our community guide was always able to find the information we need.
[The guide] knew what we needed and how to get it now.
She was aware of a lot of resources that helped take the load off of us.
This [the community guide] opened a lot of doors.
She helps out when you can't find anyone else.
She helped by asking questions I wouldn't have thought of.
The remaining 5 families with satisfactory community guide experiences who were also interviewed made no direct comments on the relationship between their community guide and the outcomes they achieved. Because we did not directly ask such a question, this omission does not necessarily indicate the lack of such a relationship. The fact that comments regarding the relationship of the community guide and outcomes achieved by families were spontaneous on the part of families leads us to a tentative interpretation that the community guides did play a major causal role in supporting families to achieve positive outcomes.
Based on these interviews, we define a community guide as a person who helps families access resources that they might not otherwise consider or have adequate time, opportunity, or awareness of to pursue. The community guides provide families with information about community resources and do the research and legwork to get them needed information about resources and how to access them.
These interviews also suggest that effective community guides are those who are persistent, knowledgeable, able to follow through, and able to communicate. Community guides with these traits seem to be the most successful at helping families meet their needs by listening to and understanding the family's circumstances and by locating resources in the community that address those unique circumstances. Even with the family support movement shifting its focus to include the families of people with disabilities in the process of selecting their services and supports, many times services offered by administrators in large state bureaucracies fail to “see and hear” the needs and concerns of individual families (Racino, 1998). Often, one type of service is provided that may be suitable and satisfactory for a large number of families, yet entirely inappropriate for others. Families may not have the opportunity to define their own needs and access natural supports. Providing community guides as a resource to support families by listening and responding to each family's needs appears to be a positive step in this direction.
Results suggest that the use of the community guide—when it is a good community guide—is a much-needed asset for families. Compared with families who did not use a community guide, however, those families having a poor experience with a guide actually reported less satisfaction with outcomes. This information, coupled with the data from these interviews, implies that a good community guide who is clear about his or her role and is persistent is clearly an appropriate resource to offer families. Families, however, would be better off finding their own resources than having a less-than-qualified community guide help them. This points to the fact that community guides must be recruited and screened sufficiently to identify people with the necessary skills and characteristics.
We believe the community guide program as described in this study and used by families in the Family Support Opportunities program was successful, in part, because the guides acted as guides not managers. Taylor et al. (1989) described what happens in many family support programs: “The main problem seems to be that the professionals have assumed the role of telling the parents not only what they need, but what they can have, in spite of what the families say they need” (p. 48).
Community guides as described in this study spent time listening to parents and finding resources to meet those needs. The listening and resource identification resulted in families being able to meet two concerns raised by Agosta (1989). First, they were able to be “wise consumers” because they had more knowledge of community resources and how they could be useful. Second, the community guide offers some assurances to state agencies that needed and appropriate supports will, indeed, be purchased. Community guides devoted a notable amount of their time connecting families to respite and recreational resources. These were services for which the state had provided funds but no connection to providers of those services. Given the difficulty in finding providers, without the community guides many families would not have been able to utilize the funds provided for the purchase of those services.
Some families enrolled in Washington State's Family Support Opportunities program benefited greatly from the services of community guides. In an effort to extend those benefits to other families, the managers of the program increased efforts to recruit and orient community guides to ensure an adequate number of such workers to serve all families desiring one. In addition, personnel of the Family Support Opportunities program have focused their efforts at better describing the services that can be provided by a community guide (e.g., information gathering, community resource mapping, and selecting resources that best fit family needs), thus enhancing the likelihood that families will have a positive experience with their community guide. Finally, the Family Support Opportunities program is now making information available to families indicating how community guides have helped other families and urging them to consider whether using a community guide may also be beneficial to them. Family satisfaction with community guides is now also being monitored at a local level through post cards mailed to case managers, thus providing more immediate feedback on the effectiveness of particular community guides. We believe all of those efforts should result in an overall improvement in the Family Support Opportunities program by providing a valuable resource, community guides, to more families.
Finally, we emphasize that although community guides made a positive difference for some families in the Family Support Opportunities program, they are not the answer for all families nor can they address all the issues that families may encounter. Some families prefer to act as their own community guides. Others would like to find community resources themselves but need training and support in how to best accomplish this. The Family Support Opportunities program could provide such training and support in the future. As described and utilized in this program, it appears that community guides help families most when their role is defined as a source of information. They find resources for families, advise them of the utility of those resources, and offer assistance in condensing information to a more manageable form. Community guides seem less likely to be able to help families with more complex, pervasive issues. As long as community guides stay within the role of information gathering and synthesis, they provide a valuable support to families.
NOTE: This study was supported under contract with the State of Washington's Department of Social and Health Services, Division of Developmental Disabilities. However, the opinions expressed herein do not necessarily reflect those of the department or division. We gratefully acknowledge the support of Rita Dickey and Susie Schaefer. We also express our gratitude to Timothy Brown for creating the environment in which this research was carried out.
Authors: Lyle T. Romer, PhD, Executive-in-Residence ( email@example.com), Mary L. Richardson, PhD, Professor, Debbie Nahom, MSW, Doctoral Candidate, Elizabeth Aigbe, MS, Research Coordinator, Alice Porter, MA, Research Editor, Division of Developmental Disabilities and the Center for Disability Policy and Research, Department of Health Services, 146 N. Canal St., Suite 313, University of Washington, Seattle WA 98103