Back in 1997, I wrote an article about networks supporting adults with disabilities in the community. A form of it was published in a journal but is no longer available. I had published this actual article on a website I had at the time in 1997 called "The center for the study of religion and disability." Later, I made it available on my website jeffmcnair.com
I am citing the article in some writing I am currently doing, so I thought I would make it available here in case people would want to see it. Even though it is old, I believe it is still relevant. Particularly as we think about the contribution of churches to community integration.
So take a look at this. You might minimally look at the evaluative criteria as a way of thinking about how churches could contribute to community integration.
A Discussion of Networks Supporting
Adults with Disabilities in the Community
© Jeff McNair, Ph.D.
California Baptist University, Riverside, California, USA
Running Head: NETWORKS
disabilities are supported as adults by one or a combination of four networks.
These include a) the state-supported network, b) the contrived network, c) the
existing network, or d) the self-developed network. Each of these network types
is examined across a schema for network evaluation. Conclusions are drawn
relative to further research and the need for multiple solutions to the problem
of supporting adults with disabilities in the community.
Natural support to individual with disabilities
Networks and individuals with disabilities
A Discussion of Networks Supporting Adults with Disabilities in the Community.
Human services for individuals with disabilities have embraced the notion of natural supports. Natural supports are to be purveyed in all life settings. Originally arising out of the work setting, natural support has found its way to other areas of life. We hear of community based natural support, natural support applied to the medical context, or to recreation and leisure pursuits. These movements in themselves are perhaps "natural," but what is meant by the term natural supports?
The notion of natural may have some distant roots in the normalization principle espoused by Wolfensberger (1972) in the United States. Basically, the idea is to treat individuals with disabilities as normally as possible, affording them an existence which is as normal as possible. To intervene with a light touch and only when the existing resources of the community experienced by most people are insufficient.
What natural support does not entail is the creation of something new. If the something new is an outcropping of the larger society, then it might be considered acceptable. However, if the new thing has been developed strictly for individuals with disabilities, then chances are it is not natural.
A term that is closely aligned with natural supports is "existing resources." Like the chicken and the egg question, it is difficult to determine which came first. Additionally, programs that were unheard of fifty years ago, have now become fixtures in our social landscape. However, if we continue to use the normalization principle as our plumb line for determining whether something is natural or not, then we end up determining what is natural by consensus. One's life experience, although a valid experience, may not be "natural." For example, is the experience of living on welfare natural? Is the provision of government support instead of work natural? For the sub population of individuals on welfare, the answer is probably yes; particularly if they are the product of generational welfare. However, to the larger population who work, the notion of living entirely on government benefits is foreign, i.e., not natural.
Networks have been proposed as a means of maximizing natural supports. A network might be described as a group of friends and acquaintances with whom a person has relationships. By this definition, networks are natural, as they are experienced by the majority of people. According to the normalization principle, the development of networks would also be a normalizing process as it treats people as normally as possible by encouraging the development of the same social infrastructure around individuals with disabilities as persons without disabilities.
The old adage is that "it isn't what you know, its who you know." The simple fact that this adage is ingrained in American culture, evokes gut level support for the notion of networks. Hazasi, Gordon and Roe (1985) illustrated the benefit of networks in assisting people with disabilities to gain and maintain work. McNair (1991) called this interaction, "increasing the employer's investment in the worker with disabilities in terms of a willingness to provide support." Networks soften environments through the entree they provide. According to the competence/deviance hypothesis (Gold, 1980), more deviance is tolerated (social skill deficits, etc.), because of the competence brought to the work situation from knowing someone. This is reminiscent of stories about the worker who is incompetent and detested by all, but keeps his job because he is the boss' son-in-law. The competence the individual brought to the situation was related to who he knew. Relative to individuals with disabilities, although they must bring basic work competence to the employment setting, by approaching a job through a network, the minor social skill deficits which are the major reason why individuals with mental retardation lose their jobs (Greenspan and Shoutz, 1981), have a greater likelihood of being overlooked. Indeed, by approaching a job through a network, twenty-five years of societal change is accomplished in a specific microcosm. Fifty years of change occurs if the disabled person is in fact married to the boss' son or daughter!
Networks may assume a variety of forms. This paper will discuss four. State supported networks use paid agents of the state to supplement what is lacking in the support system surrounding an individual with a disability. Contrived networks attempt to mimic the natural, but their very newness may belie that they are not natural. Existing networks are truly natural as they were preexisting. Self-developed networks are perhaps the most natural of all.
The following is a description and evaluation of the four types of networks listed above. It is our goal to critically evaluate these support mechanisms. However, we do not want to simply point out one type as good and another bad. It is only through a combination of approaches that we will provide the most "supportive support" to individuals with disabilities.
Criteria for Evaluation
In order to evaluate the usefulness of networks, we must first design criteria for the evaluation. The following criteria have emerged through examination of the literature and discussions with students and colleagues. Each evaluative aspect is described below. We will then discuss the four types of networks and evaluate them according to our criteria.
Durability/Stability-This criterion relates to the toughness of the network. A durable network is probably preexisting, will be dependable and largely predictable.
Extensiveness- This criterion relates to issues of integration.
Laterality- A lateral network will foster contacts with individuals similar to oneself in terms of variables such as socioeconomic status, beliefs, ethnicity, educational expertise and vocation. Vocationally, it corresponds to the notion of "job-alikes."
Variability-A variable network will foster contacts with individuals different from oneself in terms of ethnicity, educational expertise, vocation, beliefs, and disability.
Verticality- A vertical network will foster contacts with individuals higher or lower than oneself in terms of variables such as socioeconomic status, education and employment.
Number of Members-This variable addresses the number of people who make up the network
Community Position- This criterion addresses the manner in which the network is oriented toward the community. Networks may facilitate interaction between the community and the individual. Networks might also usurp community involvement by turning interfacing membership over to professionals. Community positioned or oriented networks should result in community awareness.
Potency-This criterion assesses the ability of the network to meet an individual's needs.
Physically- Physical needs include food, clothing and shelter. I
Emotionally- Emotional needs include acceptance and emotional support.
Spiritually- Spiritual needs include framing ones reason for being, ones relationship to a "higher power," ones basic belief system, etc.
Naturality- This criterion addresses the degree of naturalness of the network.
Existing- An existing resource has a greater likelihood of being natural than a newly created one. Our earlier definition indicates that a new resource will probably not be experienced by the majority of people. It is therefore less likely to be natural. Distinction must be made, however, between a duplication or variation of a current pattern of support and the creation of a new pattern of support.
Normalizing-Using the normalization principle, a network with this characteristic facilitates treatment individuals with disabilities as normally as possible.
Natural-This variable goes back to the notion of the experience of the majority of individuals in a particular society. The experience of the majority across socioeconomic, ethnic and other boundaries would be considered natural.
Promotes Independence-This variable addresses whether the network encourages an individual to be independent.
Provides Dignity-The idea behind this variable is dignity versus charity. If involvement in the network is something the individual is proud of, it most likely provides dignity.
Potential for a Network Member to Contribute to the Network- Involvement in a network implies a mutual benefit to the individual and the network. If a network member is unable to contribute to the network, questions might be raised relative to that individual's standing within the network. What is considered a "contribution" is determined by the network. If a network is comprised solely of supporters and takers its naturality might be called into question.
Cost-Networks can be evaluated strictly on the basis of cost. Financial and otherwise.
Financial-This variable addresses the financial cost of a network.
Other-This variable addresses other costs which might be associated with membership in the network (time, emotional support, submission to a doctrine, etc.)
Associated Bureaucracy-Some networks have significant bureaucracy associated with involvement in the network.
Eligibility Criteria-Often, networks have specific written criteria which a potential network member must meet prior to being admitted.
Waiting Period-With some networks, in order to avail oneself of the benefits, there is a waiting period.
Criteria for Ongoing Participation-Once admitted, the network may require a particular status for continuance as a member.
Reduplication-This criterion asks whether the type of support being provided is being provided somewhere else in a manner which would satisfy more of the overall evaluative criteria?
Sensitivity to the Individual Case-Networks can become extensive.
Services provided via a "network" can also be provided by some
representative of the network. The resulting case load will cause
differing levels of sensitivity to each individual needing network support.
Caring Distance-The diminishing of concern/responsibility/effort (and possibly knowledge in the case of interpersonal caring distance) by people or groups as physical, interpersonal or administrative distance increases between these people or groups and the specific person, group, intervention or program of interest.
Network Philosophy- Networks will hold a common philosophy or code however loosely defined.
Participation Rules- Related to the eligibility criteria above, some networks will require potential members to acquiesce to a particular code or philosophy prior to offering network membership.
Recruitment- A network's philosophy might include a position on expansion or exclusion due to a variety of constraints (financial, bias, etc.)
Connectivity- The network may or may not encourage connectivity among members of the network.
Accessibility-An accessible network is one which is available to each individual member. Someone may have an extensive network, however, geographically it is not accessible, so the benefits which might be gained are minimized.
Transportability-This criterion looks at whether a network will travel with the individual member. Related to accessibility, if a network is not transportable, the benefits of the network are lost if one relocates.
The Four Types of Networks and their Variations
We begin by discussing the four types of networks currently in use to support individuals with disabilities in the community. Additionally, we will consider variations of the network types. Networks will then be evaluated using the criteria described above. For each of the criteria, networks will be given a; "+" for a positive rating, "-" for a negative rating and "+/-" for a mixed rating. These ratings are solely the opinion of the author shaped through professional development activities, including the presentation of this information to many groups over several years.
Let us assume an individual already has a small network (see Figure 1). This
Figure 1. The basic network for any given individual.
network is comprised of the individual with a disability, perhaps a parent, sibling, or other family member, and one other member (friend, co-worker, etc.). This will be the basic network from which we will depart for each of the models to be described. The assumption is, that this network is not completely meeting the individual with disability's needs. It must therefore be supplemented. Supplementation will take one of the following forms.
Figure 2. The state-supported network.
The State-Supported Network. State agencies exist to meet specific needs of the population (see Figure 2). For example, should individuals with disabilities have difficulty finding or maintaining work, the Department of Rehabilitation can provide assistance in finding work. Should an individual lack the potential to do any work, the Social Security Administration provides financial assistance. Should an individual be unable to live independently, in California, the Department of Developmental Disabilities through the Regional Centers, provides assistance in finding supported living arrangements. In each of these cases, individuals with disabilities did not have the resources within their "network" to meet their need. The network of which they are a part lacks the resources to meet their needs. In response, the government "safety net" catches the individual and provides a menu of services. In effect, the government in a circumscribed manner supplements or becomes a part of the network.
Hopefully, services are provided only as long as needed, and are terminated when the client achieves the desired goal (a job, a place to live, etc.). It is recognized that some individuals by definition will always need governmental support services (Will, 1984). For these individuals, services must therefore be provided for life.
Figure 3. Levels of intervention analysis (Rappaport, 1977).
Rappaport (1977) described what he called the "levels of intervention analysis." Figure 3 illustrates the levels as a series of concentric squares. The center most square represents the individual, who is within the small group, that is within the organization, which is within society. Interventions or for the purposes of our discussion, support, might be provided to each of the levels to ultimately support the individual. Using special education terminology, it is intuitively obvious, that the further you move from the individual at the center of the squares, the less intrusive to the individual is your intervention. Your intervention relies more on the environment to fulfill support objectives than would be the case if the interventionist worked directly with the individual.
In the United States, state supported networks most often focus on the individual. Individuals are assessed, and services are focused specifically at individual needs. The state agencies themselves, for as long as services are provided, become members of the network. There will often be contact with other network members such as family or friends, but from the state's perspective, support from or positive relationships between the individual with disabilities and others is "icing on the cake." They are not required, and arguably the state can provide its services as well in their absence. In some cases, the family and other non-governmental groups get in the way. The involvement of others in the community may therefore impair rather than assist in supporting the individual.
McKnight (1989) described four structurally negative characteristics of human services. These characteristics are, 1) seeing individuals in terms of their needs, 2) the effect on public budgets, 3) the effect on community and associational life, and 4) in aggregate, agencies can create environments that frustrate the potential positive effect of any single program.
Agencies are largely designed to support individuals. They are not geared to support families or the community. However, the focus on the individual is not the approach taken by all societies using a state supported approach.
In Mexico, there is a state agency called Desarrollo Integral De La Familia (DIF). This agency provides services of its own, while also coordinating other state provided services. In the life of a person with a disability, DIF might coordinate his/her social security benefits, medical benefits, work programs, etc. However, the focus of this agency is different from those in the United States. DIF works through the family rather than the individual. Using Rappaport's (1977) schema, the analogous focus is the small group rather than the individual. When a need is recognized, DIF will first study the family to assess what the family needs, to better support its member with disabilities. Assuming family contacts are made and the analysis is completed, the agency then encourages, cajoles, etc., the family to support the member with disabilities. It is only if the family disowns or refuses to support the individual, that the state agency will do what it can to help. Interestingly, however, services are poorly provided to the individual, as they are designed with the family as the focus. The agency by design relies on the small group.
It is not difficult to imagine some of the positive and negative features of this family oriented model. Positively, there is increased reliance on the resources of the small group, in this case the family. There are benefits in supporting the network most often closest to the target individual. The reliance on family resources also causes the program to be less costly to the state compared with programs having an individual focus. This approach also may assist families in getting in touch with their responsibilities to relatives they might otherwise ignore. However, these same features of the approach can be considered negative as well. There is a certain reliance upon family guilt as the motivation for assisting the member with disabilities. If this approach does not work, then the state is back to serving the individual. If the state quickly comes to the aid of the individual in the absence of family involvement, the responsibility or guilt motivation is lost. Therefore, whether by design, or due to a lack of resources, these state programs must be brutally consistent in having few services available to individuals. Such appears to be the case in Mexico. The approach is so small group oriented, the state almost doesn't know what to do with the individual. In the United States where the economy allows the government to be more generous to individuals, services are provided. In a struggling economy such as Mexico's currently, the state safety net is weak or nonexistent.
Interestingly, although not obvious, people with disabilities do rely on community support (the organization or societal level). It is understood, that many persons with disabilities will beg for money or food. In the larger cities, people beg at nearly every controlled intersection. Rumors persist among the nationals that these individuals are able to live at a sustenance or significantly better level through begging activities. Not only does the state permit these activities, this situation is accepted as a part of the culture, to the point that nationals feel they should support beggars through their contributions. It is also known that the beggars will form networks of their own, determining who will be permitted to work which areas. The question of whether this is truly natural support or not is an interesting one.
With these snapshots of the "State Supported Network" in mind, let us now evaluate this network type according to the evaluative criteria described above.
Analysis of the State Supported Network . State supported networks are very durable. They are of course dependent upon funding, and may be increased or cut back on this basis. Overall, however, these networks are durable.
The extensiveness of the networks are considered to be lacking. Laws like the Americans with Disabilities Act may promote physical integration, however, they are limited relative to aspects of social ecology (Chadsey-Rusch, 1990, Gaylord-Ross, 1988). Although governmental programs desire the development of friendships and other social interactions, they are not evaluated upon this basis. With case loads increasing and funding being constrained, programs resort to basic services. As a result, although social relationships are a desired quantity, programs are forced to focus more upon minimal standards, which consider social relationships with caseworker as desirable, but a luxury. Additionally, social relationships for many agencies are not even addressed. For example, the Social Security Administration is not in the business of developing social relationships between the general population and their clients with disabilities. Even agencies like the Department of Developmental Disabilities who endeavor to foster social relationships have limited ability to address areas of variability and verticality.
Relative to the number of members who make up the network, one might ask whether agency case workers can truly be considered network members? They provide assistance which is lacking in the life of the individual with disabilities, however, they lack many of the qualities which would qualify them as network members.
the community position of state supported networks would be one of facilitating
community involvement. Perhaps in some cases this occurs. Most often, it is
suspected that services are predominantly geared toward serving the individual.
Agencies will attempt to make the community aware, but this awareness is
focused upon the identification of people with disabilities so that the
agencies can serve them. Illich, Zola, McKnight, Caplan, & Shaiken (1977)
imply that agencies need to identify "consumers" to justify their own
existence. At present, there appears to be little effort on the part of
agencies to assist communities to provide services which the agency itself
provides, even though services currently being provided by agencies might be
better provided by the community. A positive rating would imply that agencies
are attempting to facilitate this interaction between the community and
individuals with disabilities.
State supported networks receive a mixed rating for their potency in meeting needs. The most basic physical needs (money, food, medical care, and living arrangements) are largely met through governmental programs. There are indeed segments of the population who are difficult to serve, or who "fall through the cracks," but governmental programs have the greatest potential for success in meeting physical needs.
Emotional needs are met by people. Therefore the potential for meeting emotional needs is dependent upon individual case workers at each agency. McKnight (1987) makes the distinction between care and services, arguing, most often care is what is needed and services are what is provided. Increasingly, however, although case workers might desire to address the emotional needs of their clients, budget constraints leading to increased caseloads again cause these support services to become luxury items. They are also not required of caseworkers, and so are often not provided.
Spiritual needs if met at all by the state, are met in the most tangential fashion. The strident voices advocating the separation of church and state might argue that this area should not even be broached from a state perspective. Perhaps they are right. The point is, that Americans by their behavior, have indicated that they have spiritual interests (Bezilla, 1993). State agencies are not positioned to meet these needs, therefore their potency for overall "need meeting" is diminished.
The naturality of state supported networks would also receive a mixed rating. It is true that they are existing and endeavor to promote independence. Additionally, they desire to provide dignity, assisting people to be as normal as possible. However, using the criteria described earlier, these agencies may not represent natural support because the support they provide is not experienced by the majority of the population.
Then, if an individual is truly a member of a network, they should be able to contribute something to the network. O'Donnell, Tharp, & Wilson (1993) refer to this phenomenon as reciprocal participation. There is little doubt that those who work with individuals with disabilities gain a great deal. But from the agency's perspective, they often gain the most when the individual is no longer receiving services. For example, rehabilitation has been achieved when the counselor can report a case 26 closure; 60 days of unsubsidized employment. In other words, the case is closed when the individual is working without significant involvement from the agency. The goal of agencies is to promote independence such that the agency service is no longer needed. It is true that people do participate in a variety of networks for a short term to achieve a goal (schooling, the military, etc.). However, the goal of most networks is not to work for the loss of the member, no matter how positive the reason for leaving. To have this outcome as a focus for a support network is unnatural.
State supported networks are perhaps the most costly, financially. For example, through the Department of Rehabilitation, the state may pay twenty-five dollars per hour to an employment vendor for job coaching services. State supported networks are therefore expensive to the society that supports them. There aren't significant costs otherwise. The client must participate in the programs and employers, apartment owners, etc., must cooperate with the agencies as the law demands, yet these costs are comparatively small.
State supported agencies received a mixed rating relative to bureaucracy. Eligibility criteria may be confusing. There may also be waiting periods and criteria for ongoing participation. This has been heightened recently with the implementation of the Department of Rehabilitation's "order of selection." However, once admitted, and in spite of Social Security's income reporting requirements, the criteria for ongoing participation are minimal.
The problem with reduplication of support from the perspective of this article, occurs when the state reduplicates services already being provided naturally by the community. The rating given here is mixed because there is much reduplication both with the community and between agencies. At the same time, however, there are services that are solely being provided by an agency, and in the agency's absence, these services would be sorely missed.
McNair (1996) examined the sensitivity of agencies to the individual case. Coining the term "caring distance" (see above) he went on to discuss client to case worker ratios as a critical factor in service provision. Motivated by their desire to provide the highest quality service, teachers complain about increasing class sizes and case workers complain about larger case loads. Decreased funding often results in a dilution of sensitivity to the individual case. One of the beauties of the Mexican model, is that by focusing on the family, the group with the smallest caring distance to the individual with disabilities is empowered. If working, the model catalyzes the provision of support by the group having the greatest interest in and the smallest caring distance from, the individual case if only on the basis of numbers. Caring distance therefore, would receive a mixed rating.
The network philosophy for state agencies also was given a mixed rating. Conflicting network philosophies will frustrate the individuals the agencies are attempting to serve. Additionally, some people will refuse to participate because of the rules of a particular agency. Recruitment is dependent upon resources, but people are admitted to an agency, not recruited to a network. Apart from occasional support groups there is also little connectivity.
In spite of the potential bureaucracy, state agencies are imminently accessible. Their offices are located in most major urban areas, and the public is invited.
Finally, state supported networks are highly transportable, because they are largely national in scope. True, one might have to leave a particularly good case worker, but in the new location a new case worker is assigned and services continue.
at the author's ratings overall, state supported network strengths are in the
areas of durability, accessibility, and transportability. Areas of weakness
include extensiveness, community position, financial cost and bureaucracy. Other
areas received mixed ratings.
The Contrived Network. In the preceding discussion it was noted that the state supported network supplements the networks of people who are unable, for whatever reason, to develop their own network. Although state support is important as a safety net, when it becomes the predominant means of supporting individuals with disabilities, problems arise. With this criticism in mind, we now turn to the contrived network.
Webster's dictionary (Benton, 1966) has described "contrived" as, "to fabricate as a work of ingenuity." Contrived networks are literally formed around individuals with disabilities. Helping professionals go through a process whereby they seek out individuals willing to support a particular person. The end product has been labeled the "circle of support" or "circle of friends" and has become popular across the nation (see Figure 4).
Ducharme, Beeman, DeMarasse and Ludlum (1994) describe a six step process for developing a support circle. The first step is to focus on giftedness or capacity of all individuals in the circle of support. Second, those wanting to develop a circle develop their personal dream for the future as they desire it to be. This dream includes relationships (particularly with people other than service providers), places and activities (how would one like to spend his or her time), preferences (aspects of life found enjoyable or upsetting), the vision for the future (including friends, work, community involvement, etc.), opportunities, and challenges or fears.
Figure 4. The contrived network.
In step three, the actual circle of support is formed. Involvement is based on friendship or philanthropy. Few members if any are paid for their involvement in the circle, as the motivation for involvement is interest in the family or the individual needing support.
Step four revolves around making connections with the community according to the target individual's/family's desires. The authors state that, "Circle members and others who are interested act as guides into the community" (p. 349).
This process overall is referred to as "One Candle Power." Step five then is a reminder that to start small, as "one candle" is fine. The excuse of not having professional qualifications is an unacceptable reason for doing nothing. The authors state that "every person's candle is important" (349).
By the final step, step six, circle members will have had significant opportunity to understand the experience of disabled individuals in our society, under our governmental and other systems. Whenever these systems represent barriers to the fulfillment of the target member's dreams (which have now become the group's dreams) the circle works toward changing the impeding systems.
This general approach has largely been popularized by Pearpoint (1991) and Forest (Forest and Pearpoint, 1992) among others (Perske, 1988). Pearpoint's story about the painful yet generally successful support of Judith Snow was the focus of his 1991 book, From Behind the Piano.
Referring again to Rappaport's (1977) intervention schema the contrived network is a hybrid of the individual and small group levels of intervention. The goal ultimately appears to be intervention at the small group level as state support for the contrived network is faded over time. This approach is therefore more natural as it is a half-step removed from a strictly individual approach.
Analysis of the Contrived Network. Contrived networks are probably tenuous at best. When philanthropy is the motivation of those enlisted to form the network, they become even more tenuous. The durability and stability of the network suspect.
Network extensiveness is dependent upon the success of the "facilitator" in bringing people together. There is probably less potential for laterality or verticality and the network will most often not represent a cross section of society. Variability will also be limited to the degrees of freedom the facilitator builds into the network, as well as by the number of members.
Community position has potential, if circle members seek out liaison opportunities to facilitate linking with the larger community. It is arguable though, that the circle of support may be usurping natural community involvement because of the professional input required in establishing the circle.
The contrived network might also receive mixed ratings for potency. Few small groups as represented by a circle would have the potential to meet physical needs in a manner comparable to the state. Emotional needs can be met adequately should the network have a degree of stability among members. Otherwise the constant movement of people in and out could prove more of a discouragement. Because the state currently acts as the "facilitator" either directly or via one of its agents, there is a squeamishness about developing spiritual support. Spiritual support may be provided through references to a watered down "state religion" (Carter, 1993), but beyond that spiritual support will depend upon what the circle members happen to bring to the group.
The naturality of the network will also be mixed. Circles are not pre-existing, so by our definition they lack a degree of naturality. Circles are potentially very normalizing in that they bring a target individual into contact with other people from the community. At the same time they are not normalizing because the majority of the general population does not rely on a network created by an agent of the state to meet their needs. Circles do promote independence as a major reason for being. When possible they also endeavor to provide dignity, yet their very existence in some ways stigmatizes.
The question of contributions to the network from the individual with disability is a loaded one. It is obvious that in human interactions people contribute to each other. People with disability in particular have a unique perspective on life which others without disability would do well to understand. However, in realistic terms, circles are established because the individual with disability needs shoring up. His or her position at present is not necessarily one of reaching out in support to others, and may never be. Often then, the contribution to the network will be very different from that received from the network. A creative circle will look for opportunities for the target disabled person to contribute to the network for both the benefit of the network and the disabled individual.
Costs would receive a mixed rating. Financial costs similar to the state supported network would be incurred. Professionals working to support persons with disabilities initially are used as group facilitators. Should the circle become established, group facilitation is turned over to the circle itself. As more natural support develops, costs of the program will begin to diminish. However, a "high maintenance" group would continue to accrue financial costs. Other costs would be minimal. The target individual would ultimately have to submit to plans that the group developed for his or her future, but he or she would have been involved in the development of the options anyway. This therefore could prove a minor concession. A difficulty might come in helping the target individual keep to the plan, as he might try to vary from it. For example, assisting an individual with developmental disabilities to hold to a budget can be very difficult.
As with any governmental agency, there is associated bureaucracy. One must first become linked with the agency serving individual with disabilities who would then link with the community based support vendor. The vendor would then go through the process of developing the support plan which would include, in this case, the development of the support circle. With each of these steps in the process there are eligibility criteria, waiting periods and criteria for ongoing participation.
Reduplication of services should be one of the first questions asked before taking the step toward developing a circle. If someone already has a support network, the creation of another is superfluous. However, if there truly are no other options, no other existing networks with which affiliation can be fostered, then the circle is the best option. If there are other existing options that are more natural, they should be pursued first.
The contrived network is dedicated to the individual case. Virtually all decisions are guided by what is best for the target individual. Caring distance is good as well.
Network philosophy is also highly rated. The ideas of recruitment and connectivity are high priority. Additionally, participation rules are minimal.
Relative to accessibility, once one has gained access to the agency providing contrived network services, and services are begun, there is excellent accessibility.
Transportability is minimal. An individual might move only a few blocks from his or her home (see below), and a breakdown will occur. Movement of greater distances severely limits significant participation by circle members.
The contrived network therefore, is strong in areas of sensitivity to the individual case, network philosophy and promoting independence. Areas of weakness include durability and stability, extensiveness and transportability.
In conversations with individuals who have attempted to develop circles of support, the results have been mixed. Often, a circle will be successful only for a short while. Perhaps a true life example would be illustrative. A man with epilepsy and mental retardation needed a circle of support. The experience was that many people moved in and out of the group. Most, it seemed, feared the seizures when they occurred, and would leave the group in reaction to the seizures. One particular circle member was a nurse who lived in the same apartment complex as the individual with disabilities. Throughout the changes in circle members, she remained a conscientious supporter, often checking in on him and assisting with his medication (which he refused to take). This semi-successful support system went on for several months, until the individual with disability insisted on moving to a different apartment complex. The new apartment was within the same town, but several blocks away. While the nurse lived in the same apartment complex as the man with disability, she was able to participate in the circle. However, after the move the nurse could no longer provide the support she was able to provide in the past.
This brief example should not be construed to mean that there is no place in human services for circles of support. This is only one example that points up several of the difficulties of circles; the traffic in and out of them and their fragility over time. The circle of friends may at times be the best approach. However, when other network types provide more natural, consistent and long range support, then they should be the first choice.
Figure 5. The existing network.
The Existing Network. Within all societies, there are groups of people who congregate around a common interest. The groups may discuss topics important to the group, or participate in the same sport or recreational activity. There are political groups and project oriented groups who attempt to impact the community. There are also support groups, which meet to help group members work through a traumatic life event or bad choices resulting in some form of addiction. There are also religious groups who meet around a common faith. Each of these groups is common to our society, and therefore might be considered natural. Depending upon the group, they may be preexisting to a greater or lessor extent.
Let us assume, that these groups are preexisting networks which exist for some purpose. A benefit of group participation, is that the group offers the potential for supporting its members through the resources the network commands (McKnight & Kretzman, 1984). Keeping the goal of supporting adults with disabilities in the community in mind, each group could be considered as a potential network for the target individual. Should one of these preexisting support networks be identified from among the many groups as one that provides the types of support that a target individual with disabilities needs, then potentially contacts could be made, and the person with disability could join the identified group. With monitoring, it might be observed that support is being provided in areas typically addressed by the state.
Each of the group types listed above, offer the potential for support in different areas. Of the groups mentioned, however, the one which stands apart from the rest is the local church. We will use the generic term, "church" to include groups of diverse faith, although a group might use a different term for their meeting place. Let us briefly consider the local church.
Churches are a grouping of people with a common faith. The church exists to support its members and demonstrate its faith through acts of worship to the deity of the church, and supportive acts to church members and others in the community. Churches may also be homogeneous across variables other than their faith. For example, a particular ethnic group may predominate in one church. Churches are also very heterogeneous in other areas. People of faith come from diverse backgrounds. Variability is evident in ethnicity, socioeconomic status, job types, living arrangements, lifestyle, recreation, etc. For example in the area of job types, one may walk into a church and greet a wide range of people. Perhaps Josh is a doctor, Bill is a mechanic, Fred is a teacher, Joanne is out of work, and Amy is a secretary. One might not know the vocational status of other members, because that is not the defining variable for coming together. The defining variable is the common faith. If the group were to find out that Joanne is out of work, the network would endeavor to support her until she was able to find work. She receives these benefits only because she is a member of the network, and her needs came to the network's attention.
Local churches offer a wide variety of options. The Donnelly telephone directory for the Inland Empire region of Southern California, lists 83 headings for different types of churches. Obviously not all areas experience this diversity, however, there is significant variety. Some churches are very dogmatic and fundamental and people choose to attend these churches. Others are very open with a theology that is very difficult to nail down and people also choose these churches. For the purposes of this discussion, the type of faith is not at issue. Rather it is the benefits of being a part of a community of faith, which is being addressed.
It might be construed that the author is attempting to force people into some type of mold. Questions might be raised about the separation of church and state. We have been careful in this discussion not to advocate for a particular church. We are advocating for the local church as a network, but decisions about church or not, and the faiths of the church, are totally up to the individual with the disability and his family. From the perspective of the human service worker, the question is simply asked; "Do you have a religious interest?" If the respondent should answer "Yes," the worker asks what the faith might be. If the person is not currently attending a church of the faith identified by the individual and/or family, one of that same faith, which provides support to individuals with developmental disabilities might be suggested. If the family are regular attendees of a church, the case worker would ask if the church might be contacted to discuss how it might best support the individual with disability.
Should the family indicate that they have no religious interest, then other avenues would be explored, such as sport and recreation groups, contrived networks, etc.
The reason this approach might begin with the local church is that religion is a pervasive factor in American life. The Princeton Religion Research Center (1993) has observed that in some ways, American religious life has remained unchanged for the last 55 years. In response to the question, "Did you, yourself, happen to attend church or synagogue in the last seven days?" approximately 42 percent of respondents indicated yes. With limited variability, this figure has remained constant since 1939. Relative to families of individuals with disabilities, at least one study (McNair & Rusch, 1991) found that 94 percent of parents indicated a "religious affiliation" and 61 percent considered themselves "regular attendees." McNair & Swartz (in press) found 82% of churches had individuals with developmental disabilities in their congregations. McNair & Smith (in preparation) will report that 52% of individuals with developmental disabilities surveyed, stated that they attended church in the last seven days. Yet, this common characteristic of our society has been virtually ignored. Sarason (1977) has written, "It is as if the constitutional separation of church and state had in its own ways been taken seriously by social science" (132). Obviously the local church as an existing network is not the sole solution. To suggest such would be naive and short sighted as some people have no interest in anything religious. However, church networks clearly offer the potential to participate in the solution.
Rappaport (1977) would probably consider this approach as intervention at the small group or organizational level. The goal of this approach is to link the individual with a small group associated with a larger organization, a local church. If this small group or organization were able to meet all the needs of the individual with disabilities, it would be the least intrusive setting by far, as well as the most normalizing, approach. However, there are areas in which the existing network will excel, and other areas where it will not function as effectively as state supported or contrived networks. Considering this overview, let us now evaluate the existing network, particularly as it is embodied in the local church.
Analysis of the Existing Network. The durability of existing networks will depend upon the type of existing network. With the local church as our focus, we find the network very durable. Generally, the network was in existence before the individual with disability arrived on the scene, and largely will continue to exist once the same disabled individual is gone. The network does not exist solely to support the individual, it exists for the group as well.
One of the strongest aspects of this network type is its extensiveness. Without question, the local church offers the potential for the greatest degree of integration of persons with disabilities. Because the rallying point is the common faith, the church represents significant diversity. Opportunities for laterality are generally available. Opportunities for variability of religious belief are obviously limited, however, across other domains the church is quite variable. Perhaps the greatest potential for unique integration is verticality. Where else would individuals with mental retardation, for example, have the opportunity to socially interact with others of different socioeconomic status, education, etc. in a non clinical setting? In addition, the expectation of the church network is that people will socially interact independent of variables that would typically separate them in the community. The setting is therefore engineered for vertical integration. Finally, although the sizes of churches vary, the existing network is also strong in the numbers of members. There are not only the members of the network themselves, but there is also the potential of interacting with other networks represented by the individuals in the church network. For example, a teacher who attends a church might also be a part of the local teacher's union. Through contact with the teacher at church, one also becomes connected with the teacher union.
The community position of most churches is good. The church desires to make a positive impact on the community. This is partly to fulfill the commission of their faith, and partly in an attempt to recruit members. Churches who are involved in a program of supporting adults with disabilities, for example, will not keep that fact hidden. Contrarily, they will attempt to have a community presence in order to serve their chosen population and improve how the community interacts with that population. This is not only achieved through community outreach, but through activities within their own church, as the congregation itself represents the community.
The potency of the church to meet needs is also impressive. Most churches will attempt to meet physical needs, by routinely providing food to people who come to them for assistance. They will also do the best they can to meet other needs. They are limited in their ability to meet needs such as housing and work, although some do make this area a priority. McNair & Swartz (in press) identified fifteen areas in which churches might support individuals with developmental disabilities. Support areas ranged from providing food to transportation, to help finding work. Their survey indicated that churches as a group provided support in all the areas.
Churches also work to meet emotional needs. Overall, it is a network where people can feel connected. They can feel they are accepted and cared for. The extent to which a church does not meet emotional needs is an indication that the church is failing in its mission.
More than any other group, the church offers the potential of meeting spiritual needs. People choose a religious faith on the basis of their perceived spiritual needs. The state is clearly not in this business.
Churches are existing and natural. Virtually every community within the United States has a local church of some kind. The ubiquitous nature of churches, coupled with the experience of a large percentage of Americans leads to this conclusion.
As a network churches are normalizing, in comparison to the other network types. The support provided is provided to all who attend. The attendee with a disability is therefore simply just another member needing support. McNair & Smith (in preparation) again observed that individuals received support merely because they "arrived at the doorstep." Churches at the same time attempt to foster independence and dignity. This is partially evidenced in the opportunities for service the church provides. McNair & Swartz (in press) found that over 50 percent of respondents indicated that they provide opportunities for individuals with developmental disabilities to be involved in service to the church.
The cost for involvement is minimal from a financial perspective. The church is often criticized for its pleas for money, and these do indeed occur, particularly from television evangelists. However, the money taken up by local churches is probably not considered a compulsion by most of those who choose to attend. This cost still might be considered a negative by some. Others would point to the cost of submission to a doctrine, or a set of rules. Once again, the member makes the choice to submit himself to the rules. If the rules or doctrines are too prohibitive or not sufficiently prohibitive, she chooses a different church.
There is really little if any bureaucracy associated with being involved in a local church. Should one decide to become a member of a local group, she must submit to the procedures for membership, but these occur largely once in the experience with a particular church.
If there is reduplication of services, the reduplication is being done by the unnatural networks. The natural network will only do what is natural for it to do.
Churches specialize in sensitivity to the individual case. Someone might respond that he had a bad experience with a church. It is not denied that this happens, and when it does happen, it is unfortunate. However, churches rely on their membership for ongoing existence. They must therefore be sensitive to individuals if only to stay alive. At the same time, the mission of most churches is not self-preservation. Their mission usually involves developing relationships. Additionally, there are no caseloads which would diminish the caring distance.
As with the cost, some might consider submission to the philosophy of any church, negative. Participant rules might be cumbersome and recruitment efforts might seem undermining of other positions. People "get religion" like a disease and are never the same. Because these are sometimes the perceptions, mixed ratings were given. However, the connectivity of the church network is strong. Members at times have an "us against the world" mentality, resulting in a coming together. Other networks have no such connectivity ethic.
Churches are generally accessible. As congregations are a subset of society, they represent many of the same biases and prejudices of society. Within church settings, however, there is the expectation of acceptance among members. Peer pressure comes into play in a positive sense in this regard.
The last issue is the transportability of the network. Should someone move from Illinois to California, will the local church network go with her? Obviously it will not travel with her. However, by aligning oneself with a particular faith, one looks for the representative of that faith in the new location and plugs in again. There is thus a form of ongoing connectivity, although not with the same specific group of people. For these reasons, this variable was given a mixed rating.
In summary then, the author rated the local church positively in all areas except potency, cost, network philosophy and transportability. These were given mixed ratings. Overall, this network form was rated higher than both the state supported and the contrived networks.
Figure 6. The self-developed network.
The Self-Developed Network. Most people do not rely exclusively on state support. Most people also do not have a state agency contrive a network around them. What people do is develop the best network they can around themselves. In reality, people do not sit down and say, "I am going to develop a network around myself." Rather, they go to places where they can meet people, seek out friendships and participate in groups with others having a common interest. Over time, a network of people forms on whom an individual can rely. This network will be comprised of individuals and existing groups with whom a person chooses to affiliate. Perhaps at times in their lives, individuals will use government services, but most often not on a protracted basis (unless for disability, unemployment, or social security at retirement). A network that an individual develops around himself might be labeled the self-developed network (see Figure 6).
Most often, if an individual lacks such a network he or she is considered deprived. The quality of his or her life is also called into question, because of a lack of friends or social opportunities. Today we jokingly talk about people who "don't get out" who as a result of their limited life experiences do humorous things. Part of the focus behind contrived networks is to improve the quality of life of individuals with disabilities by developing a web of caring people around those who have difficulty making friends or building relationships.
The self-developed network offers the potential to be the most natural but also the most limiting form of network because it relies on the abilities of the individual with disabilities. Someone with good social skills will develop an extensive and supportive network. Individuals with disabilities, who often lack social and other skills important for network development will end up with impoverished networks.
For the purpose of our discussion, it is important to remember that the self-developed network could include a component from each of the other network forms. One can imagine someone who receives social security, who attends a local church and has other friends she has made in the community. However, if the focal individual is responsible for developing her network, the result may pale in comparison to a network facilitated by an outside agent understanding the breadth of her needs.
If an individual is developing his own network, to meet his needs, is he the recipient of an intervention (Rappaport 1977)? It may be that individuals skilled enough to negotiate society and its systems do not fit into the schema. Perhaps interventions at the societal level have been successful enough to allow individuals who in the past needed more intrusive interventions to be sufficiently successful without intervention. With each scenario described above, there is also the state supported network poised in the background as a safety net, but this is true for all.
Analysis of the Self-Developed Network. Like the existing network, the self-developed network is rated highly in most of the areas. Weaknesses would come in extensiveness, community position, potency and transportability. The extensiveness would be limited by the groups one chooses to associate with. Without encouragement, for example, a person with developmental disabilities could spend the majority of his life exclusively with other disabled persons. In such a situation, there would be the potential for lateral extensivity, however, variability and verticality might be limited.
The potency of the network to meet needs would vary according to the type of need. People with disabilities will often have extensive social networks, with other disabled persons, through which their emotional needs are met. These same friends, however, may lack the resources for need meeting in other areas. For example, should someone need money, his own network might prove limited in addressing financial needs.
Finally, the transportability of the network is limited. As one moves to a new area friends are left behind. One must therefore start over in building a peer group around oneself.
An Illustrative Example
A question which might be asked, is "When is one type of network the best option?" An illustration of when the contrived network could be the most viable option might be a situation involving emotionally disturbed or mentally ill persons. The state supported network is unable to meet the needs of these individuals in its current form. It has been the author's experience that the Department of Rehabilitation, for example, continues to seek a manner in which to serve individuals with these types of disabilities adequately. Traditional supported employment models are lacking for these individuals, as the problems they experience are different from those of the groups which have been traditionally served by most supported employment programs (mental retardation, brain injury, physical disabilities). Additionally, many of these individuals will not immediately be able to benefit from competitive employment services.
Existing networks will have difficulty with persons with emotional disturbance as they pose special challenges. Emotional disturbance is often evidenced through antisocial behavior. The disability acts itself out through a variety of behaviors which are considered inappropriate by the larger society. Should an individual with mental retardation be unable to compute the sum of an addition problem, one would blame the individual's disability. It is obvious that the individual "cannot help" that their intellect causes them to be unable to do mathematics. Another individual with an emotional disorder might evidence his disability through aggressive behavior, or verbal abuse. These evidences of disability have a moral tone, as immoral people are often aggressive and verbally abusive to others. As a result, the response is not patience with the individual's disability, but ostracism, or disdain. Existing networks will often have patience with "addition sum" types of disabilities, but have limited patience with disabilities evidenced through verbal abuse. It will therefore take significant preparation in order for a network to receive such an individual.
There are also problems with the self-developed network as an option for the individual with emotional disturbance. Often, these individuals have the types of disabilities they have because of the networks they move in. If one considers the typical day of a child placed out of home due to emotional problems, it revolves around one dysfunctional environment after another. The group home may be composed of other disturbed individuals. These students go to school where they are educated among students with emotional problems. They leave school to go back to their group home where again they are surrounded by disturbed people. The old saying that "if you want to learn French, go to France" applies here. What else can the student learn but to continue to act in the manner that originally put him in the situation he currently finds himself, if like "France," he is immersed in SED (serious emotional disturbance). With this background, what types of friends would a disturbed individual recruit to be a part of his network? Would he look for a friend who is a good student, a good citizen at school, and has a wonderful family life? Perhaps this type of friend might be sought out. Maybe he would join a gang. It is suspected that the individual with emotional problems will seek friends who reflect his experience, who are like him.
Considering the above, it seems the best option in this case, might be to contrive a network around the individual with emotional disturbance. Individuals could be recruited who have an understanding of the behaviors which accompany this type of disorder and will therefore be more tolerant. It would be critical that the network members included individuals who would be consistent, and would be able to attend over a long term. There is the potential for significant impact with the application of such an approach.
In his article, In Praise of Paradox, Rappaport (1986) advocated the embracing of paradox. One interpretation of his argument is that convergent thinking leading to a single solution only demonstrates a lack of understanding of the problem. Most social issues are a dialectic. McKnight (1994) argues for the use of at least two tools in the building of a healthy society; system and community. Multiple solutions must be put forward to not only meet the divergent nature of social problems, but to also balance the efforts of those who think and act convergently.
Although four network types were evaluated in this paper, much research needs to be completed to validate the proposed strengths and weaknesses of each of the networks. In the end, it is suspected that solutions to supporting individuals will comprise a dialectic or even trialectic of approaches. May we have the wisdom to see all potential solutions for what they are. Solutions having potential.
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