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.
McNair
A Discussion of Networks Supporting
Adults with Disabilities in the Community
© Jeff McNair, Ph.D.
California Baptist University, Riverside, California, USA
jeffmcnair@gmail.com
1997
Running Head: NETWORKS
Abstract
Individuals with
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.
KEY WORDS
Existing resources
Natural support to individual with disabilities
Network development
Network evaluation
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.
Ideally,
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.
Looking
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.
Conclusions
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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