PEER COUNSELING IN INDEPENDENT LIVING CENTERS A
STUDY OF SERVICE DELIVERY VARIATIONS
by
MAGGIE SHREVE
copyright 1991 by
ILRU Program
2323 S. Shepherd, Suite 1000
Houston, TX 77019
(713) 520-0232, 520-5136 (TTY)
ILRU PUBLICATION PRODUCTION TEAM: Rose Shepard, Dawn
Heinsohn, Nancy Richards, and Laurie Gerken
Substantial support for development of this publication was provided by
the Rehabilitation Services Administration and the National Institute on
Disability and Rehabilitation Research, U.S. Department of Education.
The content is the responsibility of ILRU, and no official endorsement of
the Department of Education should be inferred.
Table of Contents
Introduction
Definitions Associated with Peer Counseling
Definitions
Peer Counseling as an Overall Method of Service Delivery
The Hawaii CIL Model
The PAL Model
Peer Counseling as a Separate Service
Methods of Service Delivery
Matching Peers with Consumers
Disability Populations Served
Documentation of Services
Supervision
Methods of Service Delivery
1. Group Versus One-on-one
2. Paid Versus Unpaid Staff
3. Structured Versus Unstructured
Group Peer Counseling Models
Marketing Peer Counseling
Peer Counseling Personnel Issues
Titles and Structure
Staff or Volunteer
Recruitment
Burnout
Problems with Current Staff
Numbers Served
Legal Liability Issues
Supervision of Peer Counseling Services
Training Peer Counselors
Evaluation of Peer Counseling
DARE
Hawaii CILs
PAL
SEMCIL
Vermont CIL
Westside CIL
Financing Peer Counseling Services
Evaluation Required by Funding Sources
Peer Counseling Problem Areas
Recommendations for Starting a Peer Counseling Program
Conclusion
Chart I: Overview of the Six ILCs Participating in this Study
Chart II: Independent Living and Rehabilitation Paradigms
About the Author
About ILRU
PEER COUNSELING IN INDEPENDENT LIVING CENTERS:
A STUDY OF SERVICE DELIVERY VARIATIONS
Introduction
The purpose of this monograph is to examine different approaches being
used to deliver peer counseling services by independent living centers. It
presents information gathered through a mail survey to independent living
centers in late 1987 and in-depth telephone interviews conducted during
1988 and 1989 with six centers selected from the survey respondents.
For those of you who remember participating in a workshop on peer
counseling at the May 1988 national conference on independent living at
the Ramada Renaissance Hotel in Washington, D.C., we did incorporate
your issues, questions, and comments into our interview format.
The original mail survey was completed by 44 centers. This survey was
done in order to identify various models for providing peer counseling.
From the returned surveys, six centers with representative peer counseling
programs were selected to participate in the in-depth telephone interview
portion of this study.
Specifically, the six centers were selected because they represented both
urban and rural areas; were in different regions of the country, and
because they had different approaches to providing peer counseling
services, including:
--using either paid staff or volunteers to provide peer counseling services,
--viewing peer counseling either as a separate service or as a method for
delivering all center services,
--conducting peer counseling in either one-on-one or group settings, and
--requiring either professional counseling training and experience or using
in-house methods for training persons without counseling degrees.
The six centers selected include:
! Disabled Ability Resource Environment (DARE) in El Paso,
Texas;
! Hawaii Centers for Independent Living (Hawaii ClLs) in
Honolulu and several of the Hawaiian islands;
! Programs for Accessible Living (PAL) in Charlotte, North
Carolina;
! Southeastern Minnesota Center for Independent Living
(SEMCIL) in Rochester, Minnesota;
! Vermont Center for Independent Living (Vermont CIL) in
Montpelier, Vermont; and
! Westside Center for Independent Living (Westside CIL) in Los
Angeles, California.
On the whole, I think we picked a representative sampling of peer
counseling approaches around the nation. A chart outlining basic
structural issues and differences among these six centers is included at the
end of this narrative.
I have to admit that I learned a great deal through the process of
interviewing staff at these centers. I had assumed that peer counseling
was fairly well-defined by now, that we as a field had some sense of
standards with regard to peer counseling either as a direct service or as an
overall approach. I thought our language was well understood by
everyone in our field. I was wrong.
There are just as many definitions of peer counseling as there are centers.
This is not to say that there are not common elements to all peer
counseling programs--there is one upon which we all agree. Peer
counseling is provided by people with disabilities. But, the common
understanding ends there.
My own personal bias with regard to language is fairly clear. I have put in
quotes those words which I think are difficult or inappropriate to use in
the field of independent living. I use the words peer counseling as a
generic term, and I use the word consumer to refer specifically to someone
who is receiving peer counseling services.
My consulting experience in the field has pointed out some additional
difficulties that relate to the provision of peer counseling services. I am
seeing in far too many centers staff that have adopted a traditional "case
management" approach to direct service delivery, including the provision
of peer counseling. "Case management" services presume that staff (or
volunteers) are in charge of an individual consumer's "case." Independent
living should be different from traditional service providers in this regard.
I believe that centers must focus on assisting a consumer to manage his or
her own services; thus, "case management" is not only an inappropriate
term, but it may also be an inappropriate process for centers to use.
In fact, I have encouraged staff at many centers to think of documentation
files as belonging to the consumer. When the consumer is leaving the
center's services, the file is his or hers. Of course, certain documentation
records must be kept at centers to prove that they have provided services
to consumers. But if staff truly believe that the consumer is in control and
the file belongs to the consumer, they are more likely to be careful about
what they put into the file and how they write up notes describing their
interactions with consumers. Center staff should, above all else, ensure
that consumers are in charge of their own goals, plans, actions--and
documentation files.
There are other language problems associated with the concept of "case
management" which became clearer to me as I interviewed various people
for this monograph. I find these words just as offensive and inappropriate
as "case management" because they imply the same medical model or
rehabilitation approach to service delivery. Words like "client," "intake,"
and "closure" indicate to me that centers are not being true to the roots and
philosophy of the independent living movement.
People who receive services from a center should be people who freely
come and request such services. Centers should want to know if a person
with a disability is well-informed enough to decide whether or not he or
she wants services from the center. On a similar note, I do not like to see
referral arrangements between a center and other service providers where
the consumer has not made a direct request for services from the center.
Consumers are "consumers of service," just like someone shopping for
food is a consumer at the grocery store.
Rather than completing an "intake," centers should be completing a
"request-for-services" form of some type. People who ask for services are
met by staff to determine if what is being requested is available from a
center. This is a simple matter, yet many centers are making it
unnecessarily complex. To me, completing an "intake" on a "client"
means to decide whether or not to "admit" someone into a program or an
institution. I sincerely hope that is not what centers are doing when
people with disabilities request services.
The concept of "closure" comes from traditional vocational rehabilitation.
Since most people with disabilities need some form of service-information
and referral or individualized goal planning or ongoing support like
personal assistance service--for their entire lives, "closure IS
inappropriate. I encourage staff at centers to think about consumers
completing goals and "leaving" or "de-activating" from a service or
program. "Closure" sounds final and exclusionary to me.
As you will see in the following pages, there is still great debate on
whether peer counselors are counselors, advocates, or simply visitors.
There are questions about whether or not peer counseling is a
goal-oriented process or ongoing support. There are major differences in
beliefs about the best method for providing peer counseling--one-on-one
or in group settings. And, there are differences of opinion about the types
of qualifications that peer counselors should have and whether they should
be paid staff or volunteers.
The purpose of this monograph is not to provide an answer as to which
approach is best, but to provide examples of different approaches being
taken to deliver peer counseling services by independent living centers.
Definitions Associated With Peer Counseling
In order to develop an understanding of ways in which these six centers
vary in their delivery of peer counseling services, information was
collected from each center in the following eight areas:
! definitions associated with peer counseling;
! peer counseling as an overall method of service delivery-,
! peer counseling as a separate service;
! peer counseling personnel issues;
! supervision of peer counseling services;
! training peer counselors;
! evaluation of peer counseling; and
! financing peer counseling services.
This monograph will follow this same sequence in presenting the results
of the interviews. The study will conclude with recommendations for
starting a peer counseling program made by staff at the six centers.
It should be noted that changes may have occurred at the six centers
participating in this study, and the peer counseling programs may now be
considerably different from the way they were when this study was being
conducted.
Also, as I mentioned, there are still many issues open for debate on the
subject of peer counseling. I hope this monograph spurs the debate in
your center.
Definitions
PEER COUNSELING. As noted, prior to conducting this study I had
assumed that there was a generally accepted definition of peer counseling
being used in the field. In fact, each center interviewed placed a slightly
different emphasis on its definition of peer counseling.
Disabled Ability Resource Environment (DARE) policy defines peer
counseling as, "Utilizing the experience and willingness of trained,
well-adjusted consumers to offer support, information, and companionship
to consumers who are in the process of adjustment."
Southeastern Minnesota Center for Independent Living (SEMCIL) staff
says peer counseling is, "A disabled individual who visits with other
disabled individuals."
At the Vermont Center for Independent Living (Vermont CIL), peer
counseling is defined as a one-on-one relationship between peer
advocate/counselor who has a disability and a peer who shares some other
similar characteristic.
Westside Center for Independent Living (Westside CIL) utilizes only
professional counselors. Staff define peer counseling as "counselors with
disabilities who have professional, academic, clinical training providing
family, group, couples, and individual counseling."
DARE, SEMCIL, and Westside CIL all offer both individual and group
peer counseling as specific services of their centers. Vermont CIL
provides individual peer counseling only as a separate service.
The Hawaii Centers for Independent Living (Hawaii ClLs) and Programs
for Accessible Living (PAL) use peer counseling as an approach to all
their services. Hawaii ClLs describe peer counseling as a "role model
through the employee who experiences a disability." PAL defines peer
counseling as "counseling provided to a person with a disability by a
person with a disability who has developed the necessary coping skills to
deal effectively with psychosocial, environmental, physiological and
societal barriers."
Almost all centers see peer counseling as a face-to-face service, but
recognize that alternative communications may be necessary. Vermont
CIL uses telephone contact at times due to the fact that the center serves
the entire state and some rural areas are hard to reach. Most centers
encourage consumers of services to come to their offices, but several
encourage consumers and peer counselors to meet wherever they are most
comfortable.
PEER. The word "peer" is sometimes defined differently in an
operational sense than it is in a global or descriptive sense. All centers
start their definitions of "peer" with someone who has a disability.
Differences among centers focus on other "peer" relationships such as age,
gender, marital status, language, ethnicity, and, of course, type of
disability.
Centers which use alternative matching techniques, aside from disability,
stress the need to meet the consumer's perception of what constitutes a
"peer" relationship. For example, if a woman is having marital problems
following the acquisition of a disability, it may be more important to her
to talk with another woman who has experienced marital difficulty than it
is to match the type of disability.
SEMCIL uses both individuals with disabilities and family members of
individuals with disabilities as "peers."
PEER ADVOCACY. If these six centers are representative of the field,
most centers define "peer advocacy' a little differently than they define
peer counseling.
Hawaii CIL sees peer advocacy as assisting another person with a
disability in terms of representing them under any
circumstances--basically giving them support. PAL is close to this
definition, adding "advocating with and on behalf of persons with
disabilities."
Mark Obitake, director of the Hawaii CILs, says that peer counseling and
advocacy cannot be separated because part of peer counseling is
empowerment of consumers. Vermont CIL refers to its peer counselors as
"peer advocate/ counselors" and clearly sees no difference between peer
counseling and peer advocacy.
DARE uses peer counselors to make initial visits and to move consumers
as quickly as possible into a group. DARE staff believe that group peer
counseling encourages systems advocacy as a part of the group's work. In
other words, the power of coming together as a group to discuss problems
related to disability also helps the group feel powerful about addressing a
common issue using advocacy techniques. Tom Carter, executive director
of DARE, says, "Peer counseling is consultation while peer advocacy is
acting for or being an agent of the consumer." The only real difference
between peer counseling and peer advocacy at DARE is the form
documentation takes. At DARE, peer advocacy is referred to as a separate
service and is listed as "individual advocacy" in a consumer's file notes.
Staff at SEMCIL in Rochester, Minnesota, sees advocacy as a separate
issue within their center's structure which is not handled by their "peer
visitors." SEMCIL uses the terms "peer visitors" to refer to those
consumers who have been trained to provide peer counseling services
under contract with SEMCIL. They have established an advocacy
commission to work on local and state advocacy issues. This commission
is composed of staff, "peer visitors," and community members. Peer
visitors are invited into the commission and then trained to offer
testimony, make speeches, etc. According to Patricia Mrdjenovich-Hanks,
peer visitors can represent the center on those issues already approved by
the SEMCIL board and executive director. She stresses that peer visitors
are not to engage in advocacy with individuals, but are expected to refer
individual advocacy problems to the program director for resolution. Staff
at SEMCIL see individual advocacy as a professional responsibility that
rests with staff.
Since Westside CIL defines its peer counseling program as a professional
counseling service, advocacy is not a part of it at all. Westside has
"community advocates" who work on local, state, and national advocacy
issues and with consumers on specific individual concerns. Westside has
also initiated self-advocacy groups, such as Westside Self-Advocates, to
work on specific advocacy agendas. These groups are led by community
advocacy staff.
Peer Counseling as an Overall Method of Service Delivery
Several centers see peer counseling as a general approach to providing all
center services rather than as a distinct service or program. They hire
people with disabilities in as many staff positions as possible with the
expectation that, no matter what the specific job title or function, these
staff will be doing peer counseling as a normal part of their job duties.
Of the six centers in this study, Hawaii CILs and PAL use this approach.
In both of these centers, staff with disabilities are expected to fill a role
model or peer model while they perform the specific tasks of their
particular job.
The Hawaii CILs' Model
Mark Obitake says there are really two levels of peer counseling within
the Hawaii CILs. The first level is one that requires ongoing, concentrated
counseling efforts to solve a problem, i.e., tendencies toward suicide,
addressing sexuality, coping skills, etc. The other level is informal and
simply involves talk between a staff member and a consumer which
occurs through the normal provision of other services. This sharing of
personal experiences and insight is what Hawaii CILs considers peer
counseling.
The Hawaii CILs have an unusual staffing chart because they have
satellite offices on various islands. In order to ensure that peer counseling
is used as a method of service delivery in the satellite offices, island
coordinators act as "intake" counselors for all services to be provided from
their respective offices. They are responsible for hiring, training, and
monitoring the performance of any other staff engaged in service delivery.
These island coordinators are like directors of satellite offices.
The other satellite office staff positions vary from island to island, but in
almost every case, people with disabilities are hired in these positions so
that peer role modeling takes place throughout the course of service
delivery. Service area counselors is the generic term Hawaii CILs use to
describe these various positions, such as housing counselor, personal care
attendant counselor, independent living skills trainer, and benefits
counselor. At the main office in Honolulu, there is a separate "intake"
counselor who handles the "intake" function and another program director
who hires and trains all service delivery staff.
At most Hawaiian island offices, referrals for service come through the
island coordinators, who act as "intake" coordinators, completing a basic
screening from an information and referral form. They interview the
consumer in the office or in the consumer's home. After this assessment,
they determine what services are needed and explain the consumer's rights
and responsibilities. Then, consumers are referred to appropriate staff for
whatever service needs they have. Hawaii uses a priority system where
people with severe disabilities are served first. Once a consumer has been
lined up with the appropriate staff, each individual staff member working
with the consumer does his or her own separate intake which gets into
more specific areas related to that staff member's respective
responsibilities and expertise.
While peer counseling is expected to occur as a by-product of ordinary
staff-consumer interaction, more formal peer counseling is also available
in Hawaii's model. If a consumer is showing signs of needing in-depth,
one-on-one counseling, then a goal for peer counseling can be established
as a formal service. Hawaii's staff look to local experts for provision of
peer counseling. For instance, if a benefits counselor feels confident
enough to deal with the consumer's needs, then he or she may be assigned
to do it. The program director of the main office gets involved by
supervising the relationship between the benefits counselor and the
consumer.
Matching consumers to peer counselors m the Hawaii model is based
upon issues of need, not type of disability. For example, if a consumer
with cerebral palsy needs help with hiring a personal assistant, the staff
person assigned to that consumer is likely to be someone who uses
personal assistance services, regardless of his or her specific disability.
When a consumer requests formal peer counseling, the program director
usually selects who the peer counselor will be. Hawaii's satellite office
staff are responsible for judging when formal "peer counseling" is
beginning to occur and then completing a peer counseling form to notify
the program director. This form requires setting of goals and outlining
areas to be covered in peer counseling. The program director monitors the
provision of peer counseling through supervision of staff and progress
being made toward completion of goals listed on the peer counseling
form.
The effectiveness and quality of peer counseling when not viewed as a
separate service is monitored by the program director through weekly
documentation review and supervisory discussions. Documentation is
generally clear enough that the program director can understand what is
going on with a particular consumer. If information in the consumer's file
is not clear, the program director calls for a consultation with the staff
person involved. Hawaii does not receive many requests for formal peer
counseling, so the program director does not have much to review in the
area of formal peer counseling. Staff consider success based upon goal
completion. A "client" satisfaction questionnaire is given every time a
service area has been completed.
When asked why Hawaii CILs chose this model of peer counseling, Mark
Obitake responded:
"Initially, we had peer counselors. In terms of what we found as a need in
the community, we needed `hard core' services more--housing, benefits,
independent living skills Training], personal care attendants--based upon
what was being requested by the consumers. There are various other
agencies doing counseling, but there are none doing hard core service
provision. The peer counselor position became obsolete, and we found we
could incorporate it for those who needed it through the service area
counselors."
The PAL Model
Programs for Accessible Living (PAL) in Charlotte, North Carolina, uses
the same approach as Hawaii in that it sees peer counseling as a method
rather than a distinct and separate service. PAL's staff use a general
documentation system and merely indicate when peer counseling has
occurred during the course of another direct service. Chester Helms,
executive director, says that all of his direct services staff provide peer
counseling. These staff include: the executive director; independent living
counselor/general or case manager; independent living
counselor/advocate; information services coordinator; and independent
living skills/attendant care class coordinator.
Like Hawaii, PAL brings every consumer into service delivery through an
"intake" process. Consumers are not matched to a peer counselor. Rather,
they see one counselor--either the independent living counselor/case
manager or the independent living counselor/advocate. If the consumer is
dissatisfied with either of these staff, the consumer can go to the executive
director to request a change. PAL does offer support groups--which they
do not view as a peer counseling service--which may be another option for
a consumer who is uncomfortable with either staff member. The
executive director engages in some peer counseling as well, usually based
upon the type of expertise he has and what the consumer needs.
PAL evaluates the effectiveness of all its services through use of "client"
satisfaction forms which are sent to consumers at "closure" and a
documentation review (quarterly by the executive director and annually
with a team from the state vocational rehabilitation agency).
Chester Helms says that starting peer counseling programs in Charlotte
has been difficult:
"We had tried on a number of occasions, starting with groups. They failed
on a number of occasions. The disabled people in Charlotte, once they are
doing well, are not enthused about coming to a group and hearing about
other people's problems. We may look at a separate program in the future.
Sometimes, peer counseling occurs informally within the support group,
but there may be communications that go beyond what the peers are
equipped to deal with so we are looking at training some of those people.
We are offering the training free of charge to groups right now. My
definition of a counselor is someone who has a degree and/or life
experiences."
Even though PAL has had some trouble developing separate peer
counseling programs, changes to its system are being considered. A teen
support group was working well in 1989, and staff were considering
expanding that program. Finding more people in the community to
provide peer counseling services is being examined as a possible new
alternative also.
Peer Counseling as a Separate Service
While two centers in this study use peer counseling as an approach for
providing all center services rather than providing it as a separate service,
all six centers use distinct procedures for delivery of "peer counseling."
The following section describes some of the issues and important criteria
used by these centers in deciding how to provide peer counseling.
In this section, the following programmatic issues will be discussed:
methods of service delivery, matching peers with consumers, disability
populations served, documentation of services, and supervision.
Methods of Service Delivery
PAID AND UNPAID STAFF. Three of the six centers in the study make
use of volunteers as peer counselors. Many of these volunteers visit
individuals with disabilities while they are still in hospitals or
rehabilitation units. In some cases, centers use paid staff to make these
visits. All centers use paid staff in some capacity for either overseeing or
delivering peer counseling services.
APPLICATION FOR SERVICES. At DARE in El Paso, an "intake"
process is used with all consumers. Even if peer counseling is not
requested, a peer counselor is assigned to call the consumer to discuss
programs and encourage participation. SEMCIL in Rochester uses an
"intake" process as well, and the program director assigns peer counselors
when the service is requested. Staff at Vermont CIL, where peer
advocate/ counselors are located all over the state, refer consumers to the
peer advocate/counselor closest to them as requests come into the central
office in Montpelier. The peer advocate/counselor then processes the
consumer's request for services, possibly referring them to another peer
advocate/counselor if someone else would be a better "match" for a
particular consumer.
CONSUMER FILES. All programs use "case" files for tracking work
done by a peer counselor with a consumer. Some centers use a service
approach which requires consumers to set goals while others see peer
counseling as a form of ongoing support. The issue of goal-setting as
opposed to ongoing service will be discussed in more detail in the
evaluation section (pp. 19-21).
Matching Peers with Consumers
Based upon the interviews conducted for this study, how peer counselors
are matched with consumers seems to depend upon: the structure and
policy of the peer counseling program, the number of peer counselors and
consumers, and the philosophical approach to providing peer counseling.
This is another area where there are many differences among this study's
six centers.
DARE encourages participation in group peer counseling. It does not
place as much emphasis on one-on-one peer counseling services. When
individual peer counseling is requested, DARE tries to match consumers
with peer counselors by disability--but they also must match according to
primary language of the consumer. El Paso has a large Spanish-speaking
population, so the demand for Spanish-speaking peer counselors is high.
The major consideration in matching peer counselors to consumers in
one-on-one services is that they are close to each other in their own levels
of adjustment. If a match does not work for whatever reason, DARE will
reassign a new peer counselor to that consumer. Executive director Tom
Carter said that DARE does not use any scientific process for making
matches, but what they have been doing seems to work well. Groups have
been based upon disability type, language preference, and specific topic or
area of interest.
The Hawaii CILs do not offer peer counseling as a separate service, but
can offer individualized peer counseling on specific topics. They have
also grouped consumers together for support in subject areas such as
computer activity. Since this center views peer counseling as a method
rather than a distinct service, matches for consumers are based upon which
services have been requested.
PAL in Charlotte uses a similar system for handling requests for
individualized peer counseling and has established support groups based
upon specific disability types. In both centers, most peer counseling is
provided by paid staff.
SEMCIL in Rochester uses part-time paid "peer visitors" based in their
central office and in two branch offices. Peer visitors usually work with
consumers in the consumers' homes. Referrals of consumers requesting
peer counseling are handled by the program director who uses a consumer
questionnaire to determine what peer counseling issues are of greatest
importance. The consumer is then matched with a peer counselor based
upon disability, family status, gender, similarity of circumstances, and/or
age. With a total of 39 available peer visitors from all three offices, there
are plenty of choices for making a match.
To meet its statewide service commitment, Vermont CIL has 11 peer
advocate/counselors working out of their homes in different parts of the
state. Seven are general peer advocate/counselors and four are deaf peer
advocate/counselors. Consumers who call into the Vermont CIL office
are then referred to peer advocate/counselors working in their area of the
state.
These peer advocate/counselors are paid staff of the Vermont center, and,
although based across the state, they are supervised by the director of the
peer advocacy/counseling program or one of two coordinators of the deaf
independence program. This seems to work well, despite the fact that
there may be no match by disability--except for one population. Through
experience, Vermont CIL learned that the cultural issues important to the
deaf community could not be provided through a hearing peer
advocate/counselor. So, they initiated the deaf independence program,
which is modeled after the peer advocacy/counseling program.
The Westside CIL in Los Angeles uses a professional counseling
approach, so it does not match consumers based upon a distinct
characteristic. After an initial "intake," the independent living services
manager refers the consumer to staff peer counselors according to time
and people available. At this time, Westside has one full-time peer
counselor and one volunteer peer counselor.
Disability Populations Served
The primary disability populations served by center peer counseling
programs are people with physical (neurological or orthopedic) and
sensory (visual and hearing, primarily) disabilities.
Representatives of the centers in the study state that they do exclude some
people from peer counseling based upon a specific disability because
practice has led them to refer people with certain types of disabilities to
other agencies for services and support.
Staff of the centers in this study reported that people with disabilities most
often not served through peer counseling programs were those with mental
illness, psychological disabilities, and mental retardation. Representatives
of these centers said that they would serve people with AIDs, but not
many had received requests for services from this population.
Reasons for not serving individuals with cognitive impairment and/or
psychological disabilities varied, but each center reported that there were
adequate support services for these populations in their community.
Other reasons for not serving consumers with mental illness or mental
retardation included:
! service is provided only to those who can self-direct their own
lives;
! the center rarely receives referrals of people with these two
disabilities;
! people who are mentally retarded tend to be isolated or
over-protected by the state system of service delivery and are hard
to reach;
! these "cases" are too difficult; and
! staff (paid or unpaid) may not be equipped to act as effective
peer counselors to these two populations.
Consumers with head injuries seem to present some different challenges to
these centers in terms of providing peer counseling services. DARE has a
well-attended head injury support group which includes family members
in addition to consumers with head injuries.
At the Hawaii centers, all services are available to people with head
injuries, but staff note that achievement of consumer goals takes longer
with people who have this disability.
PAL refers people with head injuries to other programs designed
specifically for people with head injuries.
SEMCIL serves people who are head injured, but Patricia
Mrdjenovich-Hanks remarked that currently they did not have a peer
counselor with a head injury.
Westside CIL serves people with head injuries based upon their abilities
and willingness to live independently.
One center (PAL) does not provide peer counseling to people who are
deaf or hearing impaired, but it does provide technical aids and devices to
people with this disability who qualify for their other specific services.
No other single disability group was excluded from the peer counseling
programs in these centers.
Out of the six centers described here, only one has peer counselors with a
mental disability-Hawaii ClLs has staff members who have a history of
mental illness.
Vermont is exploring the possibility of training a person who has mental
retardation to provide support and independent living skills training to
other people who are mentally retarded and are currently living in a
supervised setting. Its present peer advocacy/counseling program is open
to people with mental retardation even though there is no peer
advocate/counselor with that disability currently on staff.
Documentation of Services
All of the centers in this study require documentation of peer counseling
services through some system of "case" notes. Most require a listing of
goals set, activities conducted, person(s) responsible for activities, and any
results produced. Some file notes include time spent with consumers
while others just list brief descriptions of contacts between peer
counselors and consumers.
The elapsed time between a service contact and documentation ranges
from the next day to one month. Centers with satellite offices tend to
require documentation after the end of one month. Those that have staff
or volunteers operating out of the centers' offices expected documentation
to be completed immediately or by the end of the week. Clerical staff are
often used to tally units of service or time spent in peer counseling for
administrative reporting and evaluation purposes.
At SEMCIL, the program director takes the consumer through an initial
process and recommends both the "peer visitor" and the frequency of
visits. Peer visitors are encouraged to meet with consumers once a week
or less, but more visits can be made with the approval of the program
director. All peer visitors at SEMCIL are part-time contractual
employees. As such, they are expected to file their case notes
immediately after a visit (or if they conducted a group, immediately after
the group meeting). The program director tracks who is serving whom
and when visits are taking place so he or she can monitor documentation
closely.
All centers in this study maintain consumer files in a centralized filing
system. While Hawaii and PAL staff provide services to individuals
based upon specific needs, they still maintain central filing systems, with
each staff member submitting documentation to be filed in a consumer's
central file. Usually, the same person who supervises peer counseling or
direct services is responsible for the centralized filing system.
Only two centers discussed computerized documentation systems in the
course of preparing this monograph--Westside CIL and Vermont CIL.
Both use computer-driven evaluation systems for data entry and
generating statistical reports about peer counseling services. The other
four centers may be using computers now, but this did not seem to be an
issue of concern or importance to them when they were interviewed for
this study.
Supervision
DARE has a full-time paid peer counseling coordinator who supervises
the program and its 22 volunteer peer counselors. Hawaii, as mentioned
earlier, uses island coordinators at each satellite office who report to a
program director in the main office in Honolulu. At PAL, the executive
director supervises all staff.
At SEMCIL in Rochester, the program director is responsible for
supervising the peer visitor program. The program director conducts
quarterly meetings with peer visitors for discussions and training. In
addition, the program director may meet in person with peer visitors
individually if there are issues they need to discuss.
Vermont CIL holds meetings of its 12 peer advocate/counselors every
three weeks under the supervision of the director of the peer
advocacy/counseling program and conducts weekly telephone meetings
with each individual peer advocate/counselor. In the program serving
deaf individuals, the director supervises two co-coordinators who in turn
supervise four peer advocate/counselors.
Staffing patterns were recently changed at the Westside CIL. Now there
is only one full-time paid peer counselor who reports to an independent
living services manager who also supervises the attendant registry and
independent living skills training services.
Methods of Service Delivery
When considering peer counseling as a separate service area, several
important topics of debate arise, including:
Are one-on-one services or group sessions more effective?
Should peer counselors be paid or unpaid staff?
Should programs be structured or unstructured?
A discussion of each of these topics follows.
1. GROUP VERSUS ONE-ON-ONE
DARE's executive director and Westside CIL's former executive director
both believe group is the most effective format for providing peer
counseling services. Patricia Mrdjenovich Hanks at SEMCIL adds that
the group format is the most popular in their center where they have seven
groups in operation. Tom Carter of DARE expresses his preference:
"I prefer a group because I think group counseling, from the standpoint of
a self-help approach like AA (Alcoholics Anonymous or a `twelve-step'
program like Adult Children of Alcoholics [ACOA], Alanon for family
members and friends of alcoholics, Narcotics Anonymous, Overeaters'
Anonymous, etc.), puts more demands on the person to share and to be
more active. The one-on-one can lead to a dependent situation. This is
less likely to occur in a group setting. Plus, group is cross disability and
so it encourages individuals with various disabilities to think about how
their experiences are common rather than different."
June Isaacson Kailes, former executive director of Westside CIL, said that
she thinks the group approach is more effective but that it really depends
upon the consumer. Westside's staff peer counselor, Jeanne Whitaker,
says that group and individual service approaches are like apples and
oranges. There is no method which is more effective than another because
it depends upon the consumer. Whitaker goes on to say, "I know the value
of individual counseling is great, but groups are so powerful. Groups
require more skill from the facilitator, but they bring about a feeling of
unity that is so powerful. The relationships which develop in groups can
be strong.
Devotees of the one-on-one method believe that meeting with consumers
in their own homes or at other places of convenience for both the peer
counselor and the consumer has more value because it allows for greater
privacy and it may be easier to track progress. Hawaii defines such
meetings as outreach, adding that it increases the center's visibility in the
community.
Chester Helms, PAL's executive director, wanted a strong "case
management" system in his center to track the progress of consumers and
to ensure quality services. This is the primary reason he believes in using
the one-on-one approach. He said,
"We started off with a haphazard case management system. Many peer
counselors did not have counseling degrees. I felt we needed to be more
accountable for what we were doing to grow to a sophisticated
organization. I still find that a strong need. When we train people out in
the community, there will be a system of documentation, review, and
evaluation to ensure that we are hiring the right people and providing the
best counseling and information available."
Helms says that group touches on problems but does not go deeply
enough. He believes it is harder to trust in a group; that it is easier to
develop that trust with one other person.
SEMCIL believes that making both group and one-on-one services
available is important because it offers a choice to the consumer. While
they have 22 peer visitors, only 32 consumers are receiving
individualized, one-on-one service. Two hundred forty consumers are
participating in SEMCIL's seven groups. These groups are facilitated by
peer visitors who have received specialized training in group facilitation
and are supported at times by social workers from the Mayo Clinic which
is located in Rochester
Vermont's JoAnn Gibson recommends one-on-one peer counseling
because of the advocacy component that should be included. In Vermont,
the strength of the peer advocacy/counseling program is the one-on-one
relationships that have developed new advocates. She supports the group
or network concept, but in her geographical setting, one-on-one works
best.
2. PAID VERSUS UNPAID STAFF
Using paid staff or volunteers as unpaid staff is an essential question to
consider in establishing a peer counseling program. Some individuals
interviewed for this study believe that only volunteers can be true "peer"
counselors. They believe that as soon as people receive payment to
provide counseling services, they begin thinking of themselves as
professionals. Others believe that it is unfair to ask people with
disabilities to perform a service without pay. At a minimum, the centers
in this study which use volunteers provide travel reimbursements.
There are many issues to be addressed when considering a volunteer
program. Volunteers cannot be forced to perform or produce. They can
quit at any time. They may be more difficult to supervise because there is
less control without the "carrot" of a paycheck. There are even liability
issues to consider--liability issues which may affect a center's general
liability insurance or other potential legal issues.
Westside CIL started with volunteers, moved to professional, clinical
counseling staff, and now is looking at a combination of both. According
to Jeanne Whitaker:
"In the beginning, we trained volunteer peer counselors. But we spent so
much time in supervision and training, we thought it was more effective to
hire full-time staff The good volunteers we had went off to get degrees
and find jobs. When we decided to hire staff, we decided that we needed
people with clinical skills and experience because the problems being
posed by consumers were so complicated that professional skills were
needed. It was more than that-things were coming up and volunteers were
getting in over their heads, e.g., psychotic episodes, consumers were
having hallucinations, etc. The supervisor was having to do all the work.
Professional staff have been used since late 1979 or early 1980. Now, we
are looking at both: professional staff and a crew of volunteers who would
provide peer support. They would be closely supervised [by the staff peer
counselor~ so that trained people could intervene whenever necessary.
We plan to call the program PALS--Peer Advocate and Lay Support."
3. STRUCTURED VERSUS UNSTRUCTURED
The three centers of PAL, SEMCIL, and Vermont emphasized a need for
sound structure of the program. This structure includes clear policies and
procedures, job descriptions with clear lines of authority, well-defined
channels of communication for staff and consumers, and clearly
understood expectations of peer counselor performance. At these centers,
it is believed that a strong and clear structure creates the most effective
method for the provision of service, no matter which methods are chosen.
Vermont is a rural state where people with disabilities are isolated by
geography as well as the isolation which can occur simply by having a
disability. The Vermont CIL has experienced such success with its
one-on-one peer advocacy/ counseling program that many consumers
want to keep the service because they do not want to lose social contact.
This created a tremendous overload on the center's staff. As a result, the
peer counseling approach shifted from an ongoing support to a
plant/goal/action steps approach, and individuals with the greatest needs
were given priority over ongoing peer contacts. Vermont's experience led
to a more structured program to protect staff from burn-out as much as to
ensure quality of service.
SEMCIL and PAL support structured programs based upon the belief that
a system of checks and balances makes programs more effective. They
believe that peer counseling staff must be held accountable for their work
and that they must find adequate rewards for their work. In a structured
program, they can build in these features. For example, part-time peer
counselors may be expected to serve a minimum of three people during
any month. They may be expected to make contact with these three
people at least twice during the month with a preference given to
in-person contact. Writing out goals and objectives and documentation
describing work on goals and objectives offers proof of the work that peer
counselors are doing.
Group Peer Counseling Models
Five centers provide some form of group peer counseling; Vermont is the
only one which does not. As mentioned above, DARE staff believe group
is the best method for getting consumers involved and strengthening their
self esteem. While DARE refers to their groups as peer counseling, they
are the same as support or self-help groups. There is little emphasis on the
leader as there usually is in a "counseling" group. The focus of DARE's
groups tends to be more external--tackling things that need to change to
make community living more accessible--than internal or focusing on
personal issues. Some of the groups at DARE have evolved into special
topic groups, such as the DARE Devils, which is a sports group. Another
is a social group with members who go out to dinner and attend other
entertainment events. When groups focus on a specific topic at one
particular meeting, the topics tend to be advocacy issues. Tom Carter said
that accessible public transportation and community accessibility tend to
be common topics which come up in groups.
Hawaii's experience is more limited because of its geographical
restrictions, but it has sponsored a few support groups. These tend to be
disability-related or special interest groups, like a computer group and a
cooking group.
PAL sees peer counseling groups as being led by a trained peer counselor.
In fact, Chester Helms, executive director, is concerned about the image
that "support groups" gives. He says, ". . . [a] support group may not have
a trained facilitator. That type of support group can be dangerous." PAL
is doing more training of group facilitators and volunteers. PAL's groups
have been focused on disability-related topics of special interest, such as
sexuality, recreation, problem-solving, legislative updates, family
relationships, coping, assertiveness training, dealing with discrimination,
and advocacy training. They have two ongoing groups--one is for
teenagers and the other is for people with chronic fatigue syndrome.
Helms prefers that PAL start groups and then let them go.
In Rochester, groups are peer support groups which are facilitated by peer
visitors or assisted by Mayo Clinic social workers. Some allow family
members to attend and others do not. Group members make their own
decisions about who is allowed to join the group. Medical issues are of
primary interest in all seven groups currently operating. If a special topic,
such as sexuality or dealing with grief and anger, will be covered at an
upcoming group meeting, a meeting notice with that information is sent to
group members.
Westside CIL markets their peer groups as special topic meetings. Their
group goals are to provide consumers with opportunities for socialization
and to provide the group members with new beliefs and attitudes about
themselves. Their groups tend to be topic-oriented. The focus of these
groups have been on men's issues, women's issues, body image,
assertiveness training, etc. Jeanne Whitaker says that the thing she has
heard the most in group is anger at the nondisabled world for not
understanding what people with disabilities go through on a daily basis.
Marketing Peer Counseling Services
Three centers use some standard marketing techniques for informing the
public of their peer counseling services while three say they do not market
peer counseling services per se. The standard marketing techniques used
by the three centers in this study include:
! public service announcements on television and radio:
! article and announcements in center news letters;
! articles in other agencies' newsletters;
! presentations at community groups, organizations, and
churches;
! participation in the speakers' bureaus of other organizations
(like the local chamber of commerce):
! brochures, annual reports, fliers, and advertisements;
! exhibits and displays at conferences or meetings;
! tours and presentations for the United Way campaign;
! information and referral services of other agencies;
! submitting representatives for other boards, committees, and
councils; and
! referrals from other departments or divisions within the center.
Staff at the Hawaii and PAL centers stressed that they do not advertise
peer counseling as a separate service. Their outreach and public relations
efforts are designed to promote their centers as a whole. Staff at Westside
CIL remarked that peer counseling is simply included in all basic outreach
efforts with no special attention to peer counseling only.
The Vermont CIL does not initiate any marketing activities because it has
so many consumers it cannot serve. JoAnn Gibson, director of the peer
advocacy/counseling program, said "We do as little as possible. We have
not found a great need to advertise because we have a great number of
people who want services and we do not have the capacity to serve them."
Peer Counseling Personnel Issues
Peer counseling personnel issues will be addressed in the following areas:
titles and structure, staff or volunteer, recruitment, burnout, problems with
current staff, numbers served, and legal liability issues.
Titles and Structure
Titles for staff providing peer counseling services varied greatly
depending upon whether or not peer counseling was a separate service or
an approach to all service delivery. Here are the basics for the four
centers providing peer counseling as a separate service:
Westside CIL--Peer Counselor
Vermont CIL--Peer Advocate/Counselor
SEMCIL--Peer Visitor
DARE--Peer Counselor
Titles for supervisors of these peer counselors varied considerably as well,
but most were a middle management position of one kind or another.
More details about supervisors of peer counseling programs appears later
in this monograph.
PAL is the only center where the executive director has direct
involvement in peer counseling services. The other five centers have
developed full-time supervisory positions, some of which supervise only
peer counseling and some of which supervise an array of direct services
for consumers.
Staff or Volunteer
DARE uses volunteers except for the peer counseling coordinator. Tom
Carter says, "I think that when you pay a peer counselor, he or she ceases
being a peer and begins acting as a professional."
Hawaii CILs, PAL, Vermont CIL, and Westside CIL use full-time paid
staff in peer counseling positions. PAL uses both staff and volunteers.
Vermont CIL also has one full-time peer advocate/counselor and 11
part-time paid staff with hours ranging from 10 hours per week to 33
hours per week. SEMCIL uses all part-time paid staff.
Recruitment
All centers tend to recruit peer counselors from their own pool of
consumers and volunteers. Some use additional methods as well. Here is
a comprehensive list of all recruitment methods used by the various
centers covered in this study:
! Referrals from peer counseling group sessions:
! Advertisements in the local newspapers;
! Asking employees for recommendations;
! Posting job openings with the National Council on Independent
Living (NCIL);
! Other centers in the state; other centers in the region; state
vocational rehabilitation agency; and state employment service
agencies;
! Advertisements in other agency newsletters;
! Postings at colleges and universities;
! Postings at United Way offices or with United Way agencies;
! Referrals and recommendations from the board of directors; and
! Word-of-mouth, i.e., calling people known to the disabled
community and keeping lists of people to call when an opening is
available.
The biggest problem with recruitment of peer counselors seems to lie in
rural areas. The three centers serving rural areas--Hawaii CILs, SEMCIL,
and Vermont--mentioned that it was hard to find qualified people. Staff at
Vermont said that their biggest recruitment problem is finding people who
are deaf, know American Sign Language, want to do this type of work,
and are willing to work for their salary levels. SEMCIL staff identified
two major problems affecting their ability to recruit rural peer visitors:
transportation and the different attitudes of people who live in rural areas,
which is more family-based, i.e., "we take care of our own."
Regarding non-rural recruitment difficulties, Westside CIL has tried
almost all of the recruitment methods above but received little response.
Staff speculate that this could be because they are located in a large, urban
area (and possibly because they are seeking licensed counselors with
disabilities). They consulted with local employment agency professionals
("head hunters") to find out how such agencies found qualified people.
These professionals urged WCIL to use the word-of-mouth method,
keeping lists of leaders in the disabled community and contacting them by
telephone and letter whenever a job becomes vacant. Westside seems
fairly satisfied with this approach and is continuing to use it while they
re-evaluate their mailing lists and other types of posting methods.
Burnout
Burnout is a danger in any job, especially one which is intensely focused
on the needs of people. Most centers watch for burnout among all their
staff, including paid or unpaid peer counselors.
DARE's executive director works with the peer counseling coordinator on
staff development issues, ensuring that their needs are being met. Upon
occasion, he acts as a consultant to the peer counselors, advising them on
how to handle certain situations and things they can do personally to avoid
burnout.
Hawaii CILs also focus on training needs to help prevent burnout among
staff. If a staff member is interested in learning something new, the center
offers cross-training in other areas of specialization within the center. The
center also sets aside funding within its budget for conferences and
training opportunities offered by other organizations such as the National
Council on Independent Living's annual meeting and national conferences
on independent living issues.
Patricia Mrdjenovich-Hanks, program director of SEMCIL, stresses
keeping peer visitors involved in other aspects of the agency's operations.
She says they ask peer visitors to take on special projects, committee
work, and advocacy activities. She worries more about full-time staff
burnout than part-time, but in any case, she says she would reduce the
case load of a peer visitor if she saw the early signs of burnout in them.
The center's program director is responsible for talking with staff who
might be feeling stress. Mrdjenovich-Hanks suggests a team approach, for
getting peer visitors to work together and to realize they are not alone with
their stress.
PAL's executive director, Chester Helms, is most concerned about keeping
himself directly involved with peer counseling consumers and trying to
address staff problems as soon as they occur. Helms says that having an
open door policy and using a team approach helps to show staff that no
one is expected to "do it alone." The center offers recreational activities to
keep staff enthusiastic. Helms also believes that the benefits package
offered to the center's employees helps prevent burnout. PAL's package
includes a retirement plan, health insurance, and long-term and short-term
disability insurance.
Vermont CIL's JoAnn Gibson believes that the job description for peer
advocate/counselors is not realistic and needs revision. She would like to
see an increase in the total number of peer advocate/counselors so that the
number of consumers each staff member serves can be reduced. She
thinks that ongoing training, covering a wide variety of topics, is helpful
and tries to include in-service training opportunities at peer
advocacy/counseling meetings as often as possible.
Staff at Westside CIL believe that variety and greater support from
supervisory staff are the key to preventing burnout. Examining case loads
is a vital first step while providing training on different subjects is a good
second step.
Problems with Current Staff
The centers in this study were having no major problems with their peer
counseling staff. Tom Carter mentioned that on one occasion a peer
counselor was released because he began seeing himself as a professional
and was misrepresenting the center and its services.
Chester Helms expressed greater interest m developing more "support
networks" with other agencies and groups concerned with disability
issues. He sees a community need which could be addressed by peer
counselors and which cannot be met with his current staff. For instance,
he thinks that help is needed 24 hours per day, seven days a week and that
depressions are most common on holidays and weekends when his center
is closed. Helms stressed that this was not a problem with his current staff
members, but a systemic problem he is thinking about as he evaluates his
center.
June Isaacson Kailes and Jeanne Whitaker saw different problems with
their staffing arrangement, and changes have already been made. Kailes'
concern was whether or not only professional, clinical staff should be peer
counselors. Whitaker's concern is that WCIL has had an expectation that
peer counseling is contentfocused rather than process-focused. She says,
"Instead of focusing on the client's psychological make-up, they [peer
counselors elsewhere] focus too much on what the client says. Content
must always be considered as a function of an underlying process. It
involves looking at how a person sees himself functioning in the world."
Numbers Served
Much of the above information may be helpful to anyone wishing to start
a peer counseling program or adopt peer counseling as a method or
approach to service delivery. But only when such information is tied to
actual numbers of people served do these concepts become real.
The numbers of people served by one-on-one peer counseling services
varied widely. All of the centers in this study provide some form of
one-on-one service. Staff interviewed also gave an average number of
people who could be effectively served by a full-time peer counselor.
These averages were much closer from center to center.
Both Hawaii CILs and PAL use peer counseling as a method for delivery
of all their independent living services. Hawaii CILs' services staff
averages about 45 consumers per month, including the main office and the
island offices. PAL averages between 50 and 60 consumers per month
with its full-time service staff. PAL's volunteer peer counselors average
five total consumers per month. DARE, which uses only volunteer/peer
counselors, serves an average of three consumers per month per peer
counselor.
Vermont CIL's peer advocate/counselors were serving an average of 35 to
40 people per one full-time equivalent staff position. Now, after cutting
back to reduce burn-out, they are averaging 25 per month. Westside CIL,
with one fulltime professional peer counselor, averages between 30 and 40
consumers per month.
SEMCIL, which uses paid part-time contractual staff, averages six total
consumers per month, but Patricia Mrdjenovich-Hanks, program director,
points out that averages do not matter much. She believes it is more
important to have a wide variety of "peer visitors" available for
consumers, regardless of whether or not they are all serving someone at
any given moment.
Last year, SEMCIL had a total of 22 peer visitors who served 32
consumers over the year. This constituted an average of 1.5 consumers
per peer visitor per year. Now, SEMCIL is serving 38 consumers per year
with 31 peer visitors. This is an average of 1.2 consumers per peer visitor
per year. Not counting group leaders, Patricia Mrdjenovich-Hanks says
that eight peer visitors are active on a regular basis. This indicates that
some peer visitors serve quite a few more consumers than others. To try
to get a better picture of their service, Hanks said that 200 hours of
individualized peer visitor service was provided last year. This would
mean that the 32 consumers served averaged 6.25 hours of service for the
year. Mrdjenovich-Hanks adds that 312.75 hours was provided in group
(including time spent on preparation and group facilitation). These
statistics give some indication of how difficult it is to give accurate
averages when using different types of personnel and approaches.
When asked about the ideal number of people who could be served by one
full-time peer counselor, the typical response from the centers interviewed
was 20 to 30. One center believed 40 consumers would be about right
while another believed ten consumers would be more appropriate.
One can only speculate about why volunteer peer counselors serve so
fewer people than paid staff. It could be because volunteers are available
for less time per month or because it is more difficult to secure
documentation from volunteers or because centers want to have a large
number of peer counselors available even if they are not always needed.
Legal Liability Issues
Because of laws in such states as Missouri and Ohio where state laws
specify legal and illegal services based upon licensure or certification of
service personnel, each center was asked if it had any legal liability
concerns. The Missouri law, for example, lists specific types of
counseling which are permissible in the state and who is qualified to
provide such forms of counseling. Peer counseling is not listed in
Missouri law.
None of the centers in this study were located in states where laws barred
peer counseling. There was minimal difference of opinion among the staff
interviewed for this monograph about how potential liability issues should
be handled. Most have liability insurance policies covering peer
counselors.
Tom Carter at DARE said that while state laws regulated some counseling
services based upon the titles used by counselors, peer counseling is not
covered in Texas state law. DARE insures its volunteers through its
general insurance package. Because local hospitals sanction peer
counseling within their facilities, Carter does not believe liability is an
issue.
Hawaii CILs have a liability insurance policy included with their general
insurance package as well. Staff are expected to spell out liability issues
with consumers when they first request services. Hawaii staff ask
consumers to sign a statement acknowledging that their rights and
responsibilities have been explained to them, including the liability issue.
Mark Obitake reported that liability issues are carefully covered when new
staff are trained as well as in subsequent staff training.
Chester Helms at PAL says that North Carolina does not have laws
barring peer counseling unless a fee is charged--then a counselor must be
certified. PAL has liability insurance covering staff and board that costs
$410 per year.
In Rochester, SEMCIL covers its peer visitors with a professional liability
insurance policy. Patricia Mrdjenovich-Hanks was not aware of any laws
barring peer counseling, but added that a state statute on independent
living includes peer counseling as a service.
Vermont does not have any laws barring peer counseling. The liability
insurance policy covering the center's direct service personnel (not
including officers and directors) is between $4,000 and $5,000 per year
based upon an annual operating budget of $933,000.
The Westside CIL in Los Angeles carries malpractice insurance on its
professional peer counselor. Staff are not aware of any legal restrictions
affecting peer counseling in California law.
Supervision of Peer Counseling Services
Each center involved in this study had one full-time person whose duties
included supervision of peer counseling. Titles for supervisors of peer
counseling services varied almost as much as those for peer counselors:
Westside CIL--Independent Living Services Manager
Vermont CIL--Director of Peer Advocacy/ Counseling
SEMCIL--Program Director
PAL--Executive Director
Hawaii CILs--Program Director or Island Coordinators
DARE--Peer Counseling Coordinator
Some of the significant issues for supervision of peer counseling include
whether or not the supervisor should be involved in the provision of peer
counseling and whether or not there is a difference between supervising
volunteers as opposed to paid staff.
Of the six centers in this study, five centers required or stated a strong
preference for a college degree in a related area for the staff member
responsible for supervising peer counseling. While having a disability
may not be a requirement, most centers indicated a preference for a person
who is disabled in this supervisory role.
The executive directors at DARE and PAL, and the island coordinators of
the Hawaii CILs do get involved in providing peer counseling depending
upon the need and the issue. DARE executive director Tom Carter says
he becomes involved at times, but feels that his participation constitutes
professional counseling rather than peer counseling because he has the
professional credentials of a doctorate in counseling. Hawaii's island
coordinators may become involved in a peer counseling relationship, but
the main office's program director does not. Mark Obitake said that the
island coordinators are generalists and must be able to handle any issue
which comes to their attention.
Chester Helms at PAL said that when sexuality issues are brought up in
peer counseling sessions, consumers are referred to him because he has
the necessary expertise to counsel in such areas. He also works with the
teen support group on a regular basis. He estimates that he spends about
ten hours a month providing peer counseling services.
Westside CIL, Vermont CIL, and SEMCIL all have program directors or
services managers supervising peer counseling. None of these supervisors
engage in peer counseling services. SEMCIL's Patricia
Mrdjenovich-Hanks points out that she is not disabled, so she could not be
a peer. She says, however, that with her background in counseling, she is
able to teach generic counseling skills to peer visitors and that her current
peer visitors do not see her non-disabled status as an issue.
All of the centers who use volunteers as peer counselors believe the
biggest difference between supervising paid staff as opposed to volunteers
is one of control. Helms at PAL said, "I can fire a paid staff person who
does not do the job. It is harder to fire a volunteer. The volunteers do not
have as much contact and knowledge; staff hear things every day and keep
up more quickly. I treat staff differently than I do volunteers."
June Isaacson Kailes, former executive director of Westside CIL, says,
"You have a lot more clout with staff. You have to be a lot more
forgiving with volunteers. Volunteers are not as reliable. They get a job
and they are gone. There is more drop out in the training programs,
starting with a big group and ending up with a small one. There is a lot
more care-taking with volunteers."
Jeanne Whitaker, Westside's peer counselor projected that she would
spend as much time working with a new volunteer as she would a staff
member. She stressed the need to find independent workers--paid or
unpaid--with good skills and good judgment so that intensive supervision
would not be needed.
Training Peer Counselors
Training peer counselors is an important component to a successful peer
counseling program. All centers included in this study provide some form
of counseling training except Westside CIL which only hires professional
counseling staff. Westside assumes its peer counselors have already been
adequately trained and certified or have the credentials to be certified or
licensed counselors. The other five centers use a combination of methods
to train peer counselors. All five require a person to undergo some
training before beginning to provide service to consumers.
DARE provides a one-day workshop covering independent living
philosophy, active listening, and self-discovery exercises to help people
learn more about themselves and to become aware of their own biases.
This training occurs semi-annually. It is conducted by the peer counseling
coordinator on staff with assistance from other people from the
community who have expertise in specific areas to be covered. For
example, a police officer might offer in-service training on self-defense
techniques or someone from a local domestic violence shelter might talk
about how to spot signs of physical abuse and battering. DARE also uses
people who are already peer counselors in their training program.
A two-day training workshop is provided by Hawaii CILs' program
director to new services staff. This training covers an introduction to peer
counseling concepts, responsibilities, role models, emotional support,
awareness of disability, listening skills, ways to respond to people,
behavior types, and body language. To keep existing staff enthusiastic
and to maintain a sense of "peerness," Hawaii provides ongoing training
during its regular staff meetings. Mark Obitake describes the importance
of these meetings:
"For us, what helps is a continual sharing among staff during staff
meetings about our own personal stuff. By doing that, we can still keep in
touch with the feelings we had when we learned we had a disability. That
is the tie which tends to keep people at a peer level. It is re-checking and
'stepping out of role' process. You have to learn that skill if you are doing
peer counseling. 'Stepping out of role' includes looking back, looking at
how society looks at you, and what you have experienced relevant to your
disability and not your job. 'I am still a consumer.' "
PAL's Chester Helms assumes that direct services staff have life
experience along with n educational background in counseling. PAL
provides its own training as well. Training is one-and-a-half hours per
week for four to six weeks for new staff. Topics covered in this training
include: coping skills; learning how to listen; how to refer out to other
agencies; assertiveness; advocacy; legal and economic issues; laws; and
administrative procedures. Additional training is secured from United
Way, state vocational rehabilitation, and other professionals. One staff
person has attended ILRU's training for peer counseling supervisors.
Another example of use of outside training was a minority college which
offered counseling training for people who were working specifically with
blacks. Chester Helms says that training stresses listening skills and
making use of life experiences.
In Rochester, SEMCIL~s program director provides training to peer
visitors, using professionals from the community, like psychologists and
panels of representatives from other agencies. "Peers do not make direct
referrals to agencies--they refer to staff who, in turn, make a decision
about appropriateness and then refer them to the appropriate agency," says
Patricia Mrdjenovich-Hanks. "We stress that they [peer visitors] are there
to help with problem solving-not to provide advice or act as a professional
counselor. The issues they should be addressing should be
disability-related, not emotional issues outside the disability." She also
said that SEMCIL's program director is expected to have a background in
training. According to Mrdjenovich-Hanks, the training SEMCIL
provides seems to be keeping peer visitors on track.
The director of peer advocacy/counseling in Vermont spends five to seven
days training a new peer advocate/counselor. Training covers:
philosophy, paper work; role playing; and skills training. For existing
staff, training is included in the meetings of all peer advocate/counselors
held every three weeks. JoAnn Gibson uses various people from
benefit-granting organizations (i.c., Social Security Administration,
Medicaid) to provide in-service training for peer advocate/counselors.
The state vocational rehabilitation agency makes its training programs
available to Vermont CIL also, but the decision to attend rests with an
individual peer advocate/counselor. Gibson says that Vermont's emphasis
on peer relationships and not on professional counseling has kept the
perspectives of staff in line with the principles and philosophy of the
independent living movement. She says that peer advocate/ counselors
are good at referring people who need professional counseling to other
agencies in the state.
Since Westside CIL staff come to the center with professional training, the
only training provided to new staff is orientation to independent living, the
center, other programs, and national efforts. In-service training is used as
well, covering issues such as language usage, the medical model, and
consumer control issues. It is available to all staff. A master's degree in
counseling is required for peer counselors, and they are required to
maintain their licensure if they have acquired it. The supervisor
(independent living services manager) must be licensed as a counselor,
social worker, or in a related professional counseling area. Westside
encourages peer counseling staff to attend outside training and pays for
such training as the budget permits.
June Isaacson Kailes (former executive director at Westside) and Jeanne
Whitaker (Westside's current peer counselor) differ on how "peerness" is
maintained in their program. Kailes believes that maintaining a sense of
being a peer is a problem in a professional counseling relationship.
Whitaker does not:
"I don't necessarily think there is any kind of conflict between being a
professional and also being a peer. The counselor must feel comfortable
in the role of 'helper' and being the person in that relationship who is
helping the other person--who has a little more knowledge, more training,
greater insight than the person being helped. In my mind, the peer is the
person with a disability. People with disabilities can also be experts in the
service they are providing."
Evaluation of Peer Counseling
Measuring consumer progress largely depends upon the peer counseling
approach used. Not unexpectedly, those centers which see peer
counseling as a form of ongoing support seem to have greater difficulty
measuring consumer progress than centers using a goal-setting orientation.
Evaluating the quality of any human service is difficult. Here is how the
six centers assessed quality.
DARE
While DARE's approach to peer counseling is that of ongoing support,
staff members do
review consumer records every two months to assess consumer progress
based upon an independent living plan and overall goals. Tom Carter says
he is looking for a general feeling of well-being on the part of the
consumer when he examines the quality of peer counseling cervices.
DARE puts considerable effort into obtaining consumers' perspectives on
their own progress. Group-session facilitators are required to assess levels
of participation in group activities. Consumers are asked to self-report
their feelings about the service. And, family members or significant
others in consumers' lives are encouraged to provide input to staff about
consumer satisfaction with services received.
Since peer counselors are volunteers, DARE does not use performance
reviews to judge quality or quantity of service. But, says Tom Carter, "I
would know something was wrong if our numbers dropped or if I got
many complaints. I try to turn complaints into how to do things right, and
I look at glowing reports carefully to see if something isn't going wrong."
Hawaii CILs
At the Hawaii CILs, a goal-oriented process is used as part of its direct
services program. Consumer progress is measured against goals set.
Executive director, Mark Obitake, states,
"If the consumer and counselor feel comfortable about the plan and they
are reaching the goals, we assume the quality is good. We also use a
client satisfaction survey every time a service area has been completed.
Quality is defined by goals obtained, so if the goals are not obtained, we
ask why. If the reasons are something internal like staff problems, we
might have to look at time management or work load. If the consumer is
having ambivalent feelings or drops out, we check to see if there was a
problem with the counselor."
While performance reviews are performed annually, the format does not
include a quality review of peer counseling. Peer counselors are evaluated
through training, including role playing, and through a supervisor's sitting
in on actual service delivery.
PAL
At PAL, staff-provided peer counseling is goal-oriented. PAL had begun
to offer training to volunteers to provide ongoing supportive peer
counseling. Some of the counseling offered by staff may be ongoing as
well. "For example, if someone is closed out and needs help with a
specific problem, we don't bring them through intake again," said Chester
Helms. However, if a consumer has multiple needs and has not been
involved for the last 60 days, PAL will open a new case.
Consumer progress is measured through satisfaction forms and visible
changes. When it is not occurring, the executive director talks with
both the consumer and the counselor to find out why.
Consumer progress and numbers of consumers served are taken into
consideration in annual performance reviews of staff at PAL. Each staff
member sets annual goals and objectives against which their performance
is measured and evaluated. Consumer satisfaction forms are completed at
"closure" and reviewed in the performance appraisal as well.
SEMCIL
Peer counseling is both goal-oriented and ongoing at SEMCIL. Support
must be provided or goals must be addressed for a peer visitor to continue
to provide services to a consumer. SEMCIL used to request written goals
from peer visitors, but this did not work well with most consumers. The
center does not push for written goals now. Consumer progress, then, is
measured by examination of case notes. The program director makes a
judgment about progress based upon these notes and knowledge of the
peer visitor and consumer. If the consumer elects to complete a written
plan with goals and objectives, progress is measured against it, with
results recorded in the center's evaluation system. SEMCIL uses the
Center for Resource Management (CRM) evaluation system.
SEMCIL staff evaluate the overall effectiveness of its peer visiting
program through consumer feedback forms, CRM evaluation data, and
judgment of supervisory staff. Annual performance reviews are not done
on peer visitors, but contracts are renewed annually. Patricia
Mrdjenovich-Hanks says, "Consumer progress is not considered when
reviewing the year. Consumer feedback is used, however. The number of
consumers served is not a consideration. Progress is [a full-time] staff
responsibility. Peers are intended to be an ear [i.e., they are expected to be
listeners], so they are not judged in the same way.
Vermont CIL
JoAnn Gibson reported that peer advocacy/ counseling had been an
on-going support service but is now a goal-oriented approach. Consumer
progress now is measured through periodic reviews of consumer plans,
looking at what has been accomplished, what is working and what is not,
and what should be dropped. The peer advocate/counselor reviews the
current plan with the consumer while the director of peer
advocacy/counseling discusses the review with the peer
advocate/counselor during weekly calls. If consumer progress does not
appear to be occurring, the director and counseling staff discuss problems
encountered.
Gibson points out that many problems occur because the services needed
by consumers simply do not exist. Staff then spend time brainstorming on
other possibilities or alternatives. She says they are still struggling with
the problem of consumers who are not motivated and not working toward
any goals. They are now dropping consumers who choose not to be
involved in the development of their own plans.
The Vermont CIL board of directors has a committee designed to evaluate
the effectiveness of peer advocacy/counseling services, but Gibson
believes they have not been very close to the program. She says that staff
does an annual evaluation. The last two years, this has been an internal
process. Several years ago, the Center for Resource Management
reviewed the program, looking at data and producing a written analysis. A
consumer satisfaction component and staff interview system had been in
existence at one time, but they have not been used lately.
When work with a particular consumer has ended, peer
advocate/counselors complete an outcome report which Gibson believes is
fairly objective. It lists all goals set, accomplishments, what was due to
the peer advocate/counselor's interaction, and includes room at the end for
narrative comments. They have been using the CRM evaluation system,
but plan to switch to Indicators + 1, a new system developed at the
Research and Training Center on Independent Living at the University of
Kansas.
Gibson, director of the peer advocacy/counseling program, says that
performance reviews are open and based primarily upon duties and
responsibilities in the job description. Many issues that might be
evaluated in a performance review are dealt with in frequent supervisory
meetings.
Westside CIL
June Isaacson Kailes and Jeanne Whitaker have different opinions about
how to evaluate Westside's peer counseling service. Kailes believes that
counseling should be goal-oriented. Whitaker believes counseling should
be both goal-oriented and ongoing. She says that a plan is developed at
the beginning of the counseling relationship. The plan includes goals that
can be as general as, "I want to feel better about myself," to, "I want to get
a job." Counseling continues as long as the counselor and consumer agree
that there are goals that can be reached through ongoing counseling.
Westside's staff looks at plans, and measures consumer progress against
goals set. If goals are not being met, staff examine why. If appropriate,
staff discusses problems with the consumer. Whitaker says it may be
appropriate to terminate services. "If you terminate, it's because the
consumer is not willing to let go of some behaviors or something that is
getting in the way of their goal achievement. The consumer can always
come back."
The total number of people served is included as a performance indicator
of peer counseling staff. Each staff has performance standards which are
expected to be met, but the numbers of consumers served is only a
consideration in reviewing staff's overall productivity.
Consumer progress is a consideration in performance review as well, but
Whitaker says that Westside's current performance review document is not
well suited for service delivery staff in this regard. She currently writes
narrative comments about consumer progress in her evaluation of each
consumer she serves.
Financing Peer Counseling Services
Westside CIL is the only center in our study which currently charges the
consumer a fee for peer counseling. The fee is based upon a sliding scale
and is not mandatory for the provision of counseling. The peer counselor
involved with the consumer is responsible for seeking the fees to be paid,
but if they are not available, service is not necessarily terminated. Only a
few thousand dollars is generated by this fee-for-service per year.
SEMCIL in Minnesota charges the state vocational rehabilitation agency
$34 per hour for peer visitation services under Title VII Part A funding.
Vermont CIL charges the state vocational rehabilitation agency $12 per
hour for peer advocacy/counseling services, but adds that this fee does not
support the program.
All centers in this study use a combination of funding sources to cover
peer counseling. DARE uses primarily Title VII Part B federal grant
money, but since they use volunteers for the service, peer counseling does
not represent a major portion of the organization's overall budget. The
other five centers use funding from the following sources:
! Title VII Part A federal dollars passed through the state
vocational rehabilitation or blind services agency;
! Title VII Part B federal grant money;
! Title VII Part C federal dollars;
! United Way;
! Private contributions;
! Foundation grants;
! Consumer donations;
! Grants from mental health agencies; and
! Contracts with city governments.
Evaluation Required by Funding Sources
In exchange for these various funds, sources require some sort of report.
Reports range from minimalist narrative documents to lengthy statistical
reports and explanations of services, including discussions of successes
and failures.
SEMCIL reports that Title VII Part A staff of the state vocational
rehabilitation agency performs periodic case reviews, requires monthly
reports, and quarterly analysis of goals set and achieved. They are also
providing copies of all case notes from case files to their state vocational
rehabilitation agency.
All centers receiving any form of Title VII funding are reporting statistics
and goal achievements based upon the Section 711 "A through K" criteria
under Title VII of the Rehabilitation Act as most recently amended.
These "A through K" criteria have been required of all Title VII recipients
since funding began in 1979.
Indicators that certain independent living center standards are being met
were expected to be published by the Rehabilitation Services
Administration (RSA), U.S. Department of Education, in 1988, but as of
publication date, have yet to be seen. All centers expect to be able to meet
whatever indicators are required by RSA for proof of compliance with
standards for independent living centers.
Several centers commented on reporting requirements for the United Way.
PAL seems to have a comfortable relationship with its United Way
agency. Chester Helms reports that United Way uses a narrative reporting
format that is similar to "A through K" criteria and includes successes and
failures.
SEMCIL, which serves multiple communities, must present information to
United Way which is separated by the cities served within the county.
They must also report on achievement of pre-set goals and objectives,
including case examples without using consumers' names. And, their
financial reports to United Way are lengthy and detailed. SEMCIL also
reports that foundations seem to require more frequent reports now than
they did a few years ago. Some foundations are even making site visits.
The comments of the Vermont CIL's staff on reporting requirements
probably reflect the feelings of many center staff: "They all want the
information by different categories and by different fiscal years. The
information is recorded separately depending upon the funding source."
This frustration over mounting paperwork requirements is echoed by June
Isaacson Kailes, formerly with Westside CIL. She says that some funding
agencies are "extremely overzealous," requiring a tremendous amount of
information, "more than we would ever have imagined when we started
the service. It really is quite invasive."
Peer Counseling Problem Areas
Each of the six centers has experienced at least one significant problem
with their peer counseling program. When asked to think about one major
issue, here is what they said:
! Tom Carter at DARE said their biggest problem was finding persons
willing to make a commitment to peer counseling. He adds,
"We address that by being more selective about whom we assign. This is
a standard volunteer program problem. Some of the group problems have
been with people who have become groupies- -coming to group without
any thoughts of moving on in their own lives. This is a standard problem
with support groups. Sometimes you have to challenge these folks.
Normally, we will take the groupie into an individual session to discuss
our concerns."
! Mark Obitake from the Hawaii CILs echoed one of Carter's concerns.
"The only thing we have experienced is consumers who are not motivated.
The lack of motivation is transferred to an inability to make contact. We
lose them."
! Chester Helms of PAL said that getting groups together, generating the
interest for groups, has been difficult. He wants to find answers to
identifying more volunteers to serve as peer counselors and to evaluating
volunteer peer counseling more effectively.
! SEMCIL's Patricia Mrdjenovich-Hanks says they have had no real
problems, but she would like to use people with the lesser-requested
disabilities more often. They are hoping to hire a staff member who is
deaf and thereby increase involvement with the deaf community.
! Vermont CIL's biggest problem is transportation. "Travel is a problem
because of the size of the geographic areas to be covered," says JoAnn
Gibson. "There are sections of the state that require a peer
advocate/counselor to travel the better part of a day for a one-to-two hour
meeting with one consumer." She wants to find money to hire more peer
advocate/counselors so the state can be better covered.
She also sees the image of the peer advocate/counselor in the community
as a problem needing work. Too many agencies see these staff as
care-takers of consumers, so they call staff instead of dealing directly with
consumers.
! Low numbers of referrals are a problem at Westside CIL. "Primarily
because people, even people within the center, don't understand
counseling," says Jeanne Whitaker. "We are constantly demystifying
counseling to encourage referrals. It is not as identifiable as finding an
attendant, etc. [Also] tracking goals is tedious. I can see changes, but
putting those changes down on paper and making them measurable is
difficult." To address these issues, Westside is doing more outreach and
making new attempts at educating staff. Whitaker says, "The psychology
of disability is truly unique and there are very few of us who understand
it."
Recommendations for Starting a Peer Counseling Program
All the representatives of centers involved with this study had strong,
constructive suggestions for anyone wishing to start a peer counseling
program. As one can see from the information in this study, there are a
wide variety of approaches and models among these six centers. These
variations are fairly reflective of the independent living field as a whole.
Keeping differences and variations in mind, here are the recommendations
of these six centers' staff:
! Find persons with disabilities willing to make a commitment to do peer
counseling; be selective about whom you hire and how you assign or
match consumers to peer counselors; hire enough peer counselors to do
the job that needs to be done; pay competitive salaries in order to attract
the best people.
! Consider offering group peer counseling first. DARE's Tom Carter
says, "I think the center will get a better sense of success by starting with
group and then moving to individual. It gives you a stronger base to work
from."
! The attitude of peer counselors should be that of equals or "peers," and
not that of professionals who know what is best for all consumers. One
person interviewed described this attitude as "one down" towards the
consumer instead of "one up." To be "one down" is not to be the expert.
! Whoever supervises peer counseling should be someone trained or
knowledgeable about counseling, who understands the methods of
counseling and nuances of counseling around issues of disability.
! Examine the community's needs-is there a need for peer counseling?
Rumor has it that some centers have found little demand for peer
counseling and have dropped it as a major service component or have
adopted peer counseling as an overall approach to all service delivery.
! Establish and maintain an adequate management and organizational
structure for the peer counseling program or methods you select.
! When conducting one-on-one peer counseling, be flexible about the
place where the counseling is done. Provide services in the consumer's
home.
! Secure adequate transportation for the provision of service. Chester
Helms advises centers to get their own vehicle so that transportation can
be scheduled when it is needed. There are many within the independent
living movement who might not agree with this method, but no one would
disagree that there has to be a way for people to get together in person?
! Hold the program accountable-is it doing what it said it would do? How
do you know?
! Do the necessary research before you begin designing your peer
counseling program. Weigh all options and ideas, analyzing them in
relationship to your community, before you offer service. Will your
program be easy to market in your community?
! Develop policies and procedures which articulate clearly your
program's design, methodology, approach, and structure.
! Provide adequate training and supervision to peer counseling staff,
whether they are paid or unpaid.
! Seek consumer feedback on quality and quantity of service; make use
of a consumer satisfaction system to ensure consumer control over peer
counseling.
! Secure adequate funds to support the program design you have
selected.
! Avoid allowing the peer counselor to become the "case manager," and
make sure that other agencies and organizations understand that peer
counselors are not care-takers of consumers.
! Promote the program well enough so that referrals are easily generated;
conduct outreach to ensure that potential consumers know about the
service; cross-train center staff so that they make appropriate referrals for
peer counseling services; use a tracking system so that you can determine
the source of referrals for peer counseling.
! Set standards of performance and tie staff (paid or unpaid) performance
appraisal to these standards.
Conclusion
It is clear that the phrase "peer counseling" has many shades of meaning
and interpretation. Staff at some centers believe that everything they do is
a form of peer counseling because they use individuals with disabilities in
all of their direct service staff positions. Others believe that peer
counseling is a particular form of counseling which involves people with
disabilities as counselors and recipients of services. There are a variety of
methods and approaches to establishing a peer counseling program. The
list of recommendations above is a good start for anyone who is
considering the development of a peer counseling program.
There are a few things I learned and analyzed from this work that I want
to share in this conclusion. I am a rigid supporter of the independent
living philosophy as articulated by Gerben DeJong in his publication,
Environmental Accessibility and Independent Living Outcomes (see
especially chapter two, "Independent Living: From Social Movement to
Analytic Paradigm." This work was published by the University Center
for International Rehabilitation and is now available from ILRU.) DeJong
developed a chart comparing the independent living paradigm with the
rehabilitation paradigm which continues to give me guidance in reviewing
centers and determining appropriate policies for centers which enforce the
independent living philosophy. See Chart II.
Since I began private consulting in June 1989, I have seen staff at many
centers who have no sense of this philosophy or how it is put into
operation within a center. This is truly sad. Without a strong philosophy
to guide us, the independent living movement could become just another
version of the traditional rehabilitation agency.
Peer counseling is one of the core services of the independent living
philosophy. It is based upon a simple concept of self-help. I have called
it the simplest form of communication between two people, where mutual
respect and interest are paramount. Peer counseling occurs freely in our
society without structure or policies. I call upon other consultants when I
need peer counseling. When I was an executive director of a center, I
talked with other executive directors to get my peer counseling needs met.
And when I was a student or a secretary or a direct service worker, I
talked with my peers in those situations to get the help I needed for my
emotional and intellectual well-being.
I am an assertive person who has no trouble asking for help when I need
it. I recognize that many people are not assertive for a wide variety of
reasons. I think this is where the independent living philosophy and
concept of peer counseling among people with disabilities becomes
important. Our earliest leaders recognized that there were many people
with disabilities who were taught and encouraged to be passive. People
with disabilities were not expected to talk with others who had disabilities
about similar problems, barriers and feelings. People with disabilities
were expected to turn to professionals for any needs they might have.
At first, peer counseling was informal, unstructured interaction among
people with disabilities. However, as our leaders organized and put the
first centers together, they included such concepts in their structures.
They wanted to be sure that peer counseling occurred in a
non-professional environment and that peer counseling relationships
multiplied with the growth of their centers.
Ever since federal funding has supported centers for independent living,
professionals (counselors, social workers, psychologists, administrators,
etc.) have been trying to define peer counseling. The concept is
unfamiliar to most professionals. In fact, many professionals are openly
hostile to it because it threatens-their perceived knowledge and position in
society. Witness the negative reaction to Alcoholics Anonymous 25 years
ago or some of the current thinking among professionals toward the
mutual aid/self-help organizations springing up around the nation.
Both the federal funding agency, Rehabilitation Services Administration,
and state vocational rehabilitation agencies have sought formal definitions
and codification of peer counseling. I believe that they see a need for
structure here because it is what they are most comfortable with in the
basic vocational rehabilitation program. But the beauty of peer counseling
to me is that it is informal and not structured.
Tom Carter, who is a professional with a doctorate in education, made
some of the strongest comments in this regard. He said that peer
counselors become professionals the moment you pay them. I tend to
agree. He also said that the strongest form of peer counseling is a group
method. I tend to agree again, even though there are people who are
reluctant to enter a group. Groups of people with disabilities find strength
in themselves while they find strength in their numbers. This has a
positive value that no formal organization can give to individuals.
Knowing that many individuals may find it difficult to go to a support
group simply makes the job of a center a little harder because they must be
creative in finding ways to bring people into the group. Il may be through
one-on-one counseling at first, with the understanding that everyone
eventually moves to group.
Some people say that one-on-one counseling is critical to the success of an
individual struggling to become independent in todays society. While I
cannot disagree with this assessment, I would suggest that centers may not
be the only appropriate place to get such one-on-one counseling. This is
my primary problem with the concept of "professional peer counseling."
The Westside Center for Independent Living in Los Angeles practices this
form of peer counseling based upon the belief that only a person with a
disability who has been trained and qualifies as a counselor completely
understands the psychology of disability. This may be true, but it may
also mean that there has been insufficient advocacy to ensure that
qualified professional counselors with disabilities are being hired at local
community mental health centers- -which is where non-disabled people go
when they need one-on-one counseling (among other resources).
DeJong's paradigms are the perfect guide to making decisions about what
services a center should offer and how such services should be provided.
When considering peer counseling, a center needs to be thinking about
how it will engineer the meeting of different types of people with different
types of disabilities. How can a center help these often disparate groups to
realize that their problems are basically the same? How can a center get
people with disabilities involved in the solutions to their own problems
and the problems society imposes on all people with disabilities? How
can individuals gain the knowledge and skills they need to live their own
lives and contribute something back to those who are still
institutionalized?
Answers to these questions are critical to the success of a center as well as
the success of a peer counseling program. To me, the purest form of peer
counseling is a group process where individuals with disabilities impart
knowledge but also become cheerleaders for social change. They act both
as counselors in an informal manner and advocates in a formal and public
way. They are ambassadors of a center and leaders of the disabled
community. They need not be paid staff of a center, but they can be paid
staff. The only structure guiding them is consumer demand and
philosophy-based policies from the center's board and executive staff.
Think creatively as you approach your peer counseling program design.
How can you address all the recommendations listed above as well as
answer the questions I have raised here? It is difficult work, but it is
infinitely rewarding. You, your peer counseling program, and your center
can change your community while you assist people with disabilities to
reach their rightful, independent place in society. Good luck!.
CHART I: OVERVIEW OF THE SIX ILCS PARTICIPATING IN THIS
STUDY
ILC: DARE (Disabled Ability Resource
Environment
LOCATION: El Paso, TX
PERSON(S) INTERVIEWED: Tom Carter
IS PEER COUNSELING A SEPARATE
SERVICE OR PROGRAM?: Yes
TYPE(S) OF PERSONNEL USED
IN PEER COUNSELING: Volunteers
METHODS OF PEER COUNSELING: Group
ILC: HAWAII CILS (Hawaii Centers for
IL)
LOCATION: Honolulu, HI
PERSON(S) INTERVIEWED: Mark Obitake
IS PEER COUNSELING A SEPARATE
SERVICE OR PROGRAM?: No*
TYPE(S) OF PERSONNEL USED
IN PEER COUNSELING: Staff
METHODS OF PEER COUNSELING: Group and Individual
ILC: PAL (Programs for Accessible
Living)
LOCATION: Charlotte, NC
PERSON(S) INTERVIEWED: Chester Helms
IS PEER COUNSELING A SEPARATE
SERVICE OR PROGRAM?: No*
TYPE(S) OF PERSONNEL USED
IN PEER COUNSELING: Staff and Volunteers
METHODS OF PEER COUNSELING: Group and Individual
ILC: SEMCIL (Southeaster Minnesota
CIL)
LOCATION: Rochester, MN
PERSON(S) INTERVIEWED: Patricia Mrdjenovich-Hanks
IS PEER COUNSELING A SEPARATE
SERVICE OR PROGRAM?: Yes
TYPE(S) OF PERSONNEL USED
IN PEER COUNSELING: Part-time Staff
METHODS OF PEER COUNSELING: Group and Individual
ILC: VERMONT CIL (Vermont Center
for IL)
LOCATION: Montpelier, VT
PERSON(S) INTERVIEWED: Bob Johnson and JoAnne
Gibson
IS PEER COUNSELING A SEPARATE
SERVICE OR PROGRAM?: Yes
TYPE(S) OF PERSONNEL USED
IN PEER COUNSELING: Part-time Staff
METHODS OF PEER COUNSELING: Individual
ILC: WCIL (Westside Center for IL)
LOCATION: Los Angeles, CA
PERSON(S) INTERVIEWED: June I. Kailes and Jeanne
Whitaker
IS PEER COUNSELING A SEPARATE
SERVICE OR PROGRAM?: Yes
TYPE(S) OF PERSONNEL USED
IN PEER COUNSELING: Staff
METHODS OF PEER COUNSELING: Group and Individual
__________
* In this center, peer counseling is the overall approach for providing all
center services. (See page one for a detailed discussion.)
CHART II: INDEPENDENT LIVING AND REHABILITATION
PARADIGMS
The following paradigms (models) were developed by Gerben DeJong and
are discussed in his publication, "Environmental Accessibility and
Independent Living Outcomes." Independent living as a movement for
social change is unique to existing programs and facilities providing
services to people with disabilities. Specifically, DeJong refers to the
"rehabilitation paradigm" and the "independent living paradigm" to
describe the differences between traditional rehabilitation programs and
independent living centers.
ISSUE: Definition of problem:
REHABILITATION PARADIGM: Physical or mental
impairments; lack of vocational skill
INDEPENDENT LIVING PARADIGM: Dependence upon
professionals and others; public attitudes
ISSUE: Locus of problem:
REHABILITATION PARADIGM: In the individual
INDEPENDENT LIVING PARADIGM: In the environment; in
the medical/rehabilitation model and process
ISSUE: Solution to the problem:
REHABILITATION PARADIGM: Professional intervention;
treatment
INDEPENDENT LIVING PARADIGM: Barrier removal;
advocacy; self-help; consumer control
ISSUE: Social role:
REHABILITATION PARADIGM: Individual with a disability is
a "patient" or "client"
INDEPENDENT LIVING PARADIGM: Individual with a
disability is a "consumer" of services or simply a "citizen"
ISSUE: Who controls:
REHABILITATION PARADIGM: Professional
INDEPENDENT LIVING PARADIGM: "Consumer"
ISSUE: Desired outcome:
REHABILITATION PARADIGM: Maximum self-care, gainful
employment
INDEPENDENT LIVING PARADIGM: Independence through
control over ACCEPTABLE options for daily living in an integrated,
community-based setting
Modified by Maggie Shreve
ABOUT THE AUTHOR
MAGGIE SHREVE is a consultant, author, trainer, and group facilitator
for independent living centers and related not-for-profit organizations.
She also has written "Team Building-Sharing the Power" for ILRU and
several monographs for others, including:
"Attitudes Started It All: The Movement for Independent Living;"
"Consumer Control in Independent Living Centers;
"Consumer Control: An Emerging Issue in Funding Disability Programs;"
"The Right to Die or the Right to Community Support?"
"The Tech-Access Project: A Model for Assistive Technology Service
Delivery in a Center for Independent Living;" and
"The ADA: A Basic Training Outline."
With an office based in her Chicago home, Shreve has developed a wide
range of consulting and training specialties, including: organization
development for not-for-profit organizations; board training and
development, including training about independent living philosophy,
staff training in independent living philosophy and its application in a
center; management audit or compliance review evaluating centers for
independent living based upon national standards; consultation in
management and program development-training on a variety of topics
such as principles of adult learning, grant writing, short and long-range
planning; and training for understanding of the Americans with
Disabilities Act.
Formerly the director of development and administration for the National
Council on Independent Living (NCIL), Shreve has been involved in the
field of independent living for over 13 years. She first served as director
of services for Stavros Center for Independent Living in Amherst,
Massachusetts from 1978 until 1980. Then she became executive director
of The WHOLE PERSON, Inc., in Kansas City, in 1980. Shreve left
Kansas City in 1986 to develop NCIL's first staffed office. She became a
self employed consultant in 1989.
Shreve, who was graduated with honors from the University of Cincinnati
with a B.A. degree in American history in 1972, began her career with
disability-related organizations by working as director of community
services for United Cerebral Palsy of Cincinnati.
For more information about Maggie Shreve's services as a private
consultant, contact her directly at 1523 W. Edgewater; Chicago, IL
60660-4210; (312) 989-4385 (voice and TDD); (312) 989-8268 (FAX).
ABOUT ILRU
ILRU (Independent Living Research Utilization) was established in 1977
to serve as a national center for information, training, research, and
technical assistance for independent living. In the mid-1980's, it began
conducting management training programs for executive directors and
middle managers of independent living centers in the U.S. Since 1985, it
has operated the ILRU Research and Training Center on Independent
Living at TIRR, through which is conducted a comprehensive and
coordinated set of research, training, and technical assistance projects
focusing on leading issues facing the independent living field.
ILRU has developed an extensive set of resource materials on various
aspects of independent living, including a comprehensive directory of
programs providing independent living services in the U.S. and Canada.
For more information, contact ILRU; 2323 S. Shepherd, Suite 1000;
Houston, Texas 77019; (713) 520-0232, 520-5136 (TDD).