PUTTING ADVOCACY RHETORIC INTO PRACTICE
The Role of the Independent Living Center

by June Isaacson Kailes

ISSUES IN INDEPENDENT LIVING

A Publication of the
ILRU Research and Training Center on Independent Living at TIRR

copyright 1988 by
Independent Living Research Utilization
2323 S. Shepherd, Suite 1000
Houston, Texas 77019
(713) 520-0232, 520-5136 (TTY)

ILRU PUBLICATION PRODUCTION TEAM:  Lauren Laux, Rose
Shepard, Dawn Heinsohn, Nancy Richards, and Rennea Brown.

Support for this publication was provided in part by grants from the
National Institute on Disability and Rehabilitation Research and the
Rehabilitation Services Administration, U.S. Department of Education. 
The content is the responsibility of ILRU, and no official endorsement of
the Department of Education should be inferred.

ILRU is a program of TIRR, a nationally recognized, free-standing
rehabilitation facility for persons with physical disabilities.  TIRR is part
of TIRR Systems, which is a not-for-profit corporation dedicated to
providing a continuum of services to individuals with disabilities.  Since
1959, TIRR has provided patient care, education, and research to promote
the integration of people with physical and cognitive disabilities into all
aspects of community living.

FOREWORD

In our view, there are few subjects facing the independent living field
more important than advocacy and its proper role in independent living
centers.  In the early days of independent living, advocacy--systems
advocacy, working to change the community, to change policies and laws,
to change people's attitudes--was a major preoccupation of people in the
independent living movement.  Since 1979, however, when federal
funding became available through Title VII Part B of the Rehab Act for
establishment and support of independent living centers throughout the
country, there appeared to be a shift of attention from advocacy.

Some observers of the movement (who are usually not involved in
operating centers) claim that when federal dollars were accepted, the
movement was undermined because of this lost advocacy focus.  This
sobering thought is worth considering.  Certainly it is true that many of the
early advocates are now employed by centers and are preoccupied with
the day-to-day demands of running centers--meeting service needs of
consumers, dealing with personnel problems, responding to funding
agency demands, and always, always chasing dollars.  And, certainly it is
true that the responsibilities of running centers tend to absorb all available
time, sap all existing energy, and has come close to ruining many lovely
dispositions.

We can bring you some good news, however:  we have learned that the
flame of advocacy is still lit in the breasts of many people serving at
centers.  Over the past few years, we have provided intensive management
training to approximately 100 center directors and program managers
from around the country.  We always ask them to estimate what
percentage of time is spent at their centers on direct services and
advocacy.  The split is on average 80-20 in direct services' favor.  We then
ask them what percentage of time they would prefer to see invested in
advocacy.  Their figures range from a low of 50 percent to a high of 99
percent.  (One of our favorite responses came from a center director in
New York who believes that the advocacy efforts of all centers should
have the explicit long-term goal of putting themselves out of business.)

So, we are encouraged to see that commitment to advocacy still exists at
centers.  Indeed, we know that there are centers around the country--ones
in California, Virginia, Oregon, Missouri, and Massachusetts immediately
come to mind, and there are others--that have been effective in keeping
advocacy at the top of their priorities and are doing remarkable jobs in
both delivering services and changing their communities.  We asked June
Kailes to write this monograph for those of you who may be uncertain on
how to move advocacy to a more prominent position in center priorities. 
This monograph doesn't offer easy answers.  None exist.  But it does lay
out basic issues that people within centers must consider when serious
about establishing and maintaining a high advocacy profile.  To those of
you engaged in this worthy effort, it is our hope that the guidelines
provided in this monograph will be of assistance.  And, here's to that day
in the future when together we make independent living centers no longer
necessary.

LAUREL RICHARDS
Series Editor

TABLE OF CONTENTS

INTRODUCTION

WHY ADVOCACY IS SO IMPORTANT

ADVOCACY AND SERVICES:  THE DUAL ILC COMMITMENT
 Consumer Involvement in ILCs
 Consumer Advocacy's Place in Direct Services
 Fostering Self-help Assertion and Survival Skills in Consumers
 An Illustration of Consumer Empowerment
 Avoiding "Doing Too Much" For Consumers

ESTABLISHING AN EFFECTIVE SYSTEMS ADVOCACY
APPROACH
 Independent Living Networks
 State Networks:  The California Example
 Cautions Regarding Lobbying and Advocacy
 Complying With Restrictions on Lobbying
 Need to Determine Advocacy Priorities
 Setting Major Advocacy Issues
 Dealing with Crop-up Issues
 Prioritizing and Monitoring Activities with Outside Organizations
 Developing Position Statement
 Using Spokespeople with Disabilities
 Maintaining Contact with Elected Representatives
 Tracking and Communicating Outcomes
 Disseminating Information about Community Successes and Advocacy
Impact

DEVELOPMENT OF NEW DISABILITY LEADERSHIP
 Scarcity of New Leaders for the Movement
 In Order to Get Power We Must Give Power
 Negative Effects of 'Turfism'
 Providing Support of Advocacy Groups
 Recruiting Consumers
 Preventing or Reducing the Impact of Burnout
 Successful Image
 Cloning

ISSUES NEEDING FURTHER ATTENTION AND DEBATE
 Amount of Time and Resources to Devote to Systems Advocacy
 What Constitutes Representative Consumer Input?
 Who is Responsible for Systems Advocacy?
 Threat of Co-optation

CONCLUSION
REFERENCES AND ADDITIONAL READINGS

APPENDIX:  REPRESENTATIVE CONTACT SHEET

ABOUT THE AUTHOR AND ACKNOWLEDGMENTS

PUTTING ADVOCACY RHETORIC INTO PRACTICE
The Role of the Independent Living Center

"The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself.  Therefore all progress
depends on the unreasonable man."

--George Bernard Shaw

INTRODUCTION

This monograph is intended to reinforce the importance of both individual
and system/community advocacy.  Its emphasis will be on systems
advocacy with independent living centers (ILCs).  The major areas to be
discussed include:  examination of the importance of advocacy,
establishment of an effective advocacy approach, development of new
consumer leadership, and identification of advocacy questions needing
further attention and debate.

It is no secret that the independent living movement is being criticized by
disability rights advocates who charge that:

--The commitment of center board and staff members to advocacy is
waning and ILCs are becoming no different than traditional human service
agencies.

--The fervor for changes in "the system" is being crushed by bureaucratic,
administrative, and contractual compliance concerns.

--ILCs have absorbed and quieted many effective advocates and have
played a role in draining the disability rights/independent living
movement of advocates.

We in the independent living movement need to ask ourselves if these are
valid criticisms.  Are we losing sight of a fact pointed out by Peg Nosek,
Justin Dart, and Yoshiko Dart that our society still uses, as it "has
traditionally used, an extensive and sophisticated program of
psychological, physical, and economic threats, punishments, and barriers
combined with rewards that force people with disabilities into segregated
situations and subservient roles" (Nosek, Dart, and Dart, 1981)?  It
remains critical for ILCs as well as others in the disability rights
movement to devote a portion of their financial as well as personnel and
volunteer resources to consumer and public education and to consumer
and class advocacy in order to abolish these disincentives to independent
living.  Given these concerns, it is important to start this discussion with a
review of the importance of advocacy.

WHY ADVOCACY IS SO IMPORTANT

The development and growth of the independent living movement,
including ILCs, has been significantly influenced by a social and civil
rights movement that viewed as intolerable any continuation of
discriminatory, patronizing, and unjust treatment of people with
disabilities.  This movement is not unlike the movements of other people
seeking independence.  It is a struggle by those of us with disabilities to
control our own lives; to have equal access to decision making processes
in our communities, states, and country; to be protected from
discrimination under law; and to be seen as equals and fully human by our
society (Kailes, 1986).

We have come a long way, and we need to take time to acknowledge our
accomplishments.  For a decade or more, many of us have participated in
activities on many fronts, and remarkable progress has been achieved,
including formal recognition of our rights as expressed in Section 504 of
the Rehabilitation Act.  However, complacency is dangerous, and we must
keep in mind that we have a long, challenging way to go before all of us
are treated as first-class members of society.  Our objectives remain
justice and equal rights!

To quote Justin Dart, "We must demand that this country recognize in law
and in fact that disability is a common characteristic of the human process,
and that people with disabilities have the same rights and same
responsibilities as other people."

Millions of potentially productive people of all races and ethnic groups
who have disabilities are still excluded from the mainstream of society
and denied equal opportunities to employment, transportation, recreation,
cultural activities, and community involvement.  They are still condemned
to an existence of unjust, unwanted, and degrading dependency (Dart,
1987).

Lex Frieden has pointed out that most people with disabilities are still
underemployed and underpaid, and many are not employed at all.  It is
great that there are eight million people with disabilities who are working,
but what about the eight million who consider themselves too disabled to
work or who are so discouraged that they are not even looking for work? 
What about the fact that it may still take more than a week to get:  an
interpreter for a person who is deaf; a reader for a person who is blind; a
respite worker for a person who is mentally retarded or elderly; an
attendant, paratransit, a ride on a lift-equipped van for a person who has
no other means of transportation; and medication for somebody with acute
symptoms of an emotional disability?  And who can predict how long it
will take to locate affordable and accessible housing and to get full access
to transportation, recreation, cultural, and leisure time activities? 
Insurance companies pose another problem in their reluctance to insure
people with disabilities since they consider us to be "damaged goods"
(Frieden, 1987).

Ed Hooper, writing for THE DISABILITY RAG, urges us to be aware of
the fact that fear can truly paralyze us.  Our situation is parallel to the
blacks' fight for equality--"the cause is right, but the fear was what if those
white folks turn on us?"  Blacks were justified in those fears....  The noose
waited for many of them, i.e., the white man's backlash!  We have a duty
to every person with a disability and to every person without a disability
to make the truth of our oppression real; not to settle for less, regardless of
the backlash!  Hooper observes that although many of us depend on
someone else for our care, "If we agree that the status quo is unacceptable,
we must affect change, or start wheeling back to our place in society's
shadows and corners."  We are still fighting for control of our lives, for
options.  According to Hooper, we "need a system that doesn't overwhelm
us with fear of reprisal regarding our personal lives."  We have lived with
suppressed and unidentified anger long enough (Hooper, 1987)!
Frieden points out that we "remain far away from clear, strong, consistent,
enforceable standards for addressing discrimination against people with
disabilities."  Let's be disability proud!  Let's be vigilant in our views
about equality!  Let's refuse to compromise our basic rights as human
beings!  Let's go forward, united regardless of disability type and our other
differences!  Let's demand equal opportunity, human rights, equal rights,
equal protection, and equal participation (Frieden, 1987).

To carry out this mission, independent living centers must be committed
to establishing and maintaining effective advocacy approaches.

ADVOCACY AND SERVICES:  THE DUAL ILC COMMITMENT

When viewing advocacy from the center's perspective, one must look at
both direct services as well as systems advocacy.  Just as systems
advocacy should be one of the essential missions of an ILC, it must also
be seen as an approach that is integrated into all aspects of direct services.

Consumer Involvement in ILCs

Advocacy and consumer involvement, that is, involvement of people with
disabilities, users of center services, and beneficiaries of center advocacy,
are the cornerstones of the independent living movement.  It is a firm
belief of leaders of the independent living movement that peer-conducted
services are essential to assisting a person with a disability.  Therefore, in
ILCs, 51 percent or more of the members of the staff and boards of
directors are people with disabilities who have personally experienced
civil and human rights, attitudinal, economic, physical, and
communication barriers.  Their experiences result in unique commitments
to assist others with disabilities in achieving lives of dignity.  Staff
members serve as role models, demonstrating that it is both possible and
desirable for people with disabilities to be productive and independent. 
The understanding, guidance, support, and advocacy provided through
centers gives others confidence to take the first steps toward their own
independence.  Without advocacy and consumer control there is no
movement.  Independent living was founded as a consumer movement and
has been guided by the principles of consumer control and involvement
since its inception.

ILCs both provide services and advocate for change in their community. 
This unique dual goal of service and systems advocacy meets the needs of
people with disabilities in ways that traditional social service and
rehabilitation programs do not.  ILCs must function as community
advocates.  This role is core to the ILC mission and philosophy.  We must
militantly guard this dual commitment!

Consumer Advocacy's Place in Direct Services

Consumer advocacy is mentioned only briefly in this monograph to
distinguish it from systems advocacy.  Because of its importance,
however, it deserves more attention than can be devoted to it here.

Within most ILCs, two kinds of advocacy exist:  systems, or community
advocacy, which will be described in the next section, and individual, or
consumer advocacy.  Consumer advocacy includes activities conducted to
meet needs of specific consumers and involves working with individuals
who are experiencing discrimination or other difficulties in securing
services.  Consumer advocacy typically focuses on providing training,
information, referral, and intervention for individuals.  Examples of
consumer advocacy include:  helping an individual secure a railing on
steps into a building, obtaining curb cuts, lengthening of a traffic light so
the consumer has ample time to cross a street, having "handicapped"
parking spaces set aside at the local market, etc.  Other activities include
assisting individuals who may be eligible for, or are having difficulties
with, government benefit programs or benefits provided through other
nongovernmental agencies.  Assistance is often given following
completion of an application for benefits and with mediating a variety of
difficulties regarding denials, overpayments, terminations, or changes in
an individual's service or benefit status.  If individuals are experiencing
difficulty with legal systems about problems that are disability related,
assistance is given to help them understand and pursue their legal rights
according to federal, state, and local laws and regulations.

Fostering Self-help Assertion and Survival Skills in Consumers

In consumer advocacy, the goal of helping people develop knowledge and
skills necessary for them to advocate for themselves is of prime
importance.  Such knowledge and skills can include being able to confront
unacceptable conditions that infringe upon daily living activities and
opportunities, learning how to appeal an agency's decision, lodging a
formal complaint, and filing a law suit.

The first tenet of our movement is the right to control our own lives.  A
portion of the movement is motivated by feelings of frustration, anger, and
rage aimed at "helping professionals."  These feelings are elaborated on by
Robert Funk:

Supposedly apolitical ideologies of the helping professionals in fact mask
operations of well-developed industries with a vested interest in the
expansion of their areas of control.  Thus, one reason for the significance
of self-advocacy by disabled people lies in the fact that it is a direct threat
to the millions of people who inhabit the helping professions. 
Traditionally, the helping professions saw themselves and were perceived
by disabled adults and parents as the trained experts.  This is a result of
their education and socialization into the helping profession (Funk, 1986).

In response to seeing the tremendous inadequacies of these apolitical
ideologies and those with vested interest in control of the social service
industry, the independent living movement developed its steadfast
commitment to consumer selfdirection.  This again was in direct contrast
to the more traditional and sometimes paternalistic social service and
rehabilitation models in which the "client/patient" is highly dependent on
experts.  In independent living, service coordination is considered to be
the consumer's responsibility and is performed by the consumer to the
greatest extent possible.  The staff's role is to provide only what relevant
training and problem solving is needed in acquiring and using services
until the consumer becomes self-reliant.  The move from dependence on
staff to self-direction marks the shift from "client/patient mentality" to
"consumer mentality." The former involves accepting without question the
"superior wisdom of the experts--trusting and obeying."  The latter
involves individual goal setting and personal choices regarding lifestyle,
vocation, and advocacy.  In ILCs, people are not labeled "cases" to be
managed as in case management.  They are people to be empowered to
oversee their own service acquisition and coordination.

An Illustration of Consumer Empowerment

Consumer empowerment always needs to start at the direct service level
by enabling consumers.  What does this mean?  An example might
provide the clearest explanation.  If, for example, a woman needs an
interpreter for an interview with a vocational rehabilitation counselor, the
ILC staff person who is counseling her might handle it in one of three
ways.

--The simplest way to handle it would be to tell the consumer in this
situation that she has a right to an interpreter and refer her to the
interpreter coordinator.

--A second approach would be to go a step further by not only informing
the consumer of her right to an interpreter but also making the request for
an interpreter on behalf of the consumer.

While both of these approaches meet part of the consumer's needs, neither
one empowers the consumer to be more effective on her own behalf.

--A third and more effective approach to the problem would be to explain
to the consumer that she has a right to an interpreter, explain how to
request an interpreter, and provide the consumer with information on the
federal laws that guarantee availability of an interpreter for counseling
services related to vocational opportunities.  The recourse available to the
consumer in the event that the vocational rehabilitation counselor resists
having an interpreter should also be explained.  This recourse might
include appeals to vocational rehabilitation administrators at higher levels
and, perhaps, legal actions.  It may also take the form of the consumer
working with the ILC staff to organize other consumers experiencing the
same barrier in order to brainstorm ways to deal with the issue.

By learning how to take control, consumers gain skill and power.  Once
they are informed of their rights, perhaps they will feel angry that the
vocational rehabilitation counselor did not suggest an interpreter as an
automatic reasonable accommodation.  The channeling of anger on the
part of the consumer into constructive organizing is an important
motivator in nurturing advocacy efforts.  People who are uncomfortable
and angry are more likely to take action.  In other words, the ILC has
helped consumers to identify a problem and to increase their power in
terms of their ability to change and affect the situation.

Avoiding "Doing Too Much" For Consumers

ILC staff and volunteers can, and do, fall easily into the "doing-too-much-
for-the-consumer" trap because it is the fastest way to deal with the
problem and it allows them to assist more people.  However, rarely is it
the way to permanently empower people.

Another aspect of this problem, which can occur at ILCs and is extremely
common in traditional social service agencies, is that consumers see staff
as the experts.  Consumers are reluctant to get involved and quickly
develop the attitude that they cannot resolve the problems as effectively as
the staff, therefore, they will let the staff take care of it.  A common
rationalization is, "I don't know all these rules and regulations.  I don't
know anything.  I'll let the people who do know handle the problems." 
ILCs see the negative products of these attitudes daily:  staff are
overwhelmed with a neverending but always increasing stream of
consumer problems.  Staff want consumers to get involved in the service
delivery process, but at the same time they are unconsciously,
unintentionally alienating them.  As staff become more successful at what
they do, it becomes harder to develop consumers who can play active
roles in the ILC.

Training is a way to insure that consumer empowerment is a primary
commitment of the entire ILC.  New ILC employees and volunteers tend
to identify more readily with disability issues if they have a disability or a
close relationship with someone who does.  Everyone involved in an ILC
needs to understand and to subscribe to the philosophy of independent
living and to practice methods for translating the philosophy into practice. 
Most new ILC people--board, staff, and volunteers--need training in
methods of advocacy and in means of assisting consumer of ILCs to
become their own advocates.

Staff members who are new to independent living and come from more
established settings such as hospitals, nursing homes, or other institutional
settings often have traditional approaches to consumer intervention and
sometimes find the independent living approach difficult to integrate into
practice.  They may need intensive training and supervision before they
can learn the art of "when to do for" versus when to lend support or
assistance and allow consumers to do for themselves .

An empowerment curriculum or advocacy curriculum should also be built
into every independent living skills staff training program.  In ILC
training programs, the approach of enabling and empowering versus
"doing for" must be integrated into all training, practice, and board
orientation activities.

Gordon Anthony has observed that we have developed a professional
corps of power elite within the staffs of ILCs, while at the same time have
perpetuated the powerlessness of the majority of people with disabilities. 
In effect, by providing advocacy services, we are denying people the
opportunity to self govern, and in so doing, are establishing an obstacle
which hinders people's capabilities to make their own decisions and to
control their own lives (Anthony, 1983).

Simply put:  obtain a curb cut for folks and they can cross the street. 
Teach them how to obtain their own curb cuts and they can travel the
neighborhood, the city, the world!

ESTABLISHING AN EFFECTIVE SYSTEMS ADVOCACY
APPROACH

Systems advocacy involves implementation of broad-based strategies to
increase availability and accessibility of essential services and resources,
and to create equal opportunities for independent living in society. 
Systems advocacy includes a variety of activities in the areas of
community organizing, legislative contact and testimony, and petition
writing.

Approaches for carrying out effective systems advocacy are varied.  They
include, but are not limited to:

--Setting up a speaker's bureau.

--Participating in committees, task forces, etc., at local, state and nationals
levels.

--Testifying at hearings and public meetings.

--Participating in letter writing campaigns.

--Preparing position papers for submission to legislators, judicial bodies,
community agencies, and others involved in policymaking and service
delivery.

--Drafting legislation for legislators to initiate new services or to correct
discriminatory practices and Procedures.

--Initiating and completing petitions dealing with community issues.

--Developing and placing news releases, public service announcements,
and feature stories for the media.

--Participating in public awareness activities such as rallies,
demonstrations, and other protest activities.

IL Networks

A viable and vital part of the arteries and veins of the independent living
movement are state, regional, and national networks, sometimes referred
to as coalitions, councils, or associations, which focus a portion of their
activities on systems advocacy.  As David Williams and Frances
McCaffrey write, "Strong coalitions working together with mutual respect
are the key to progress in the disability movement.  Failure to build and
maintain coalitions will lead to regression and to the oppression of people
who could be productive members of our society."  They also state that
coalitions often corrode or break up because members use the issues as
"vehicles to pursue their own agendas."  As coalition builders, we have to
be on guard against this continuing threat (Williams and McCaffrey,
1986).

According to Peg Nosek and Laurel Richards, there are currently two
national networks, two regional networks, formal networks in eleven
states (California, Florida, Illinois, Kansas, Massachusetts, Michigan,
Missouri, New York, Virginia, West Virginia, and Wisconsin), and
informal networks in seven other states (Arizona, Colorado, Minnesota,
Montana, Nebraska, Texas, and Washington).  These networks not only
serve to furnish members with opportunities for training, leadership
development, technical assistance, and informal support, but they also
have made for an increased ability to be effective in influencing
policymakers at every level of government.  Several of these networks
have been directly responsible for initiating or increasing the level of
funding which a state designates for supporting ILCs.  Others have been
influential in helping to push through important disability-related
legislation (Nosek and Richards, 1987).

State Networks:  The California Example

The California Coalition of ILCs has established an increasingly focused
and sophisticated systems advocacy approach.  Besides relying on its own
efforts and efforts of individual members for influencing state legislation,
it has hired a professional public policy consultant/contract lobbyist who
continually watchdogs a set of legislative priority issues which the
Coalition identifies each year.  This lobbyist/public policy consultant is
available to the Coalition on an average of six hours per week and reports
directly to the president and the legislative liaison of the Coalition.  The
consultant actively assists in establishing and maintaining a positive
awareness of and presence by the Coalition within the California
legislature and legislative community, as well as within various state
departments and agencies of interest.  The consultant has also been helpful
in assisting the Coalition in public policy development and non-lobbying
organizational development activities.

Funds to support this lobbyist have been raised from dues paid by each
member ILC.  The dues are determined by a formula related to the amount
of money a member ILC receives from state funds.  This formula was
chosen because without the full Coalition's efforts, each ILC would not
continue to receive increased funding from the state.  Hence, members
agreed this was a fair system for assessing dues.  According to the dues
formula, centers receiving between $150,000 and $199,000 in state funds
pay $1200 a year, between $200,000 and $249,000 pay $1700 a year, and
those receiving more than $250,000 pay $2200 a year.  Securing funds
through dues was a major breakthrough, and it was not a decision easily
arrived at by Coalition members.  It was determined that the only way to
ensure continuation of the Coalition's effectiveness and overall strength
was to pay for it, and the only way to come up with the funds at the
present time was through self-assessed dues.

Cautions Regarding Lobbying and Advocacy

At the individual ILC level, lobbying is another systems advocacy issue
about which many people are unclear.  It is of particular issue to ILCs that
rely solely on government funding sources where there are strict rules
limiting advocacy or lobbying.  For this reason, it is imperative that ILCs
focus on raising private monies which do not impose restrictions relating
to systems advocacy and lobbying activities.  Even with increased
flexibility from private funds, however, ILCs need to remain acutely
aware of the fact that government grants and contracts that fund ILCs are
not always administered by the most friendly or supportive individuals. 
There are stories about some of these administrator/monitor types,
particularly those with the agency administering the ILCs' grants or
contracts, who thrive on finding areas where ILCs, especially those having
high advocacy profiles, are not in compliance with the terms of their
grants or contracts.

For example, a new center which received funds from the state
rehabilitation agency progressed well for the first twelve months.  The
center director became active in the state ILC coalition and assumed an
advocacy stance on some issues involving the state rehabilitation agency. 
Within two months the state program monitor began to review staff ratios,
absenteeism, accounting, office procedures and the ILC was given notice
that a variety of corrective measures had to be made quickly.  The
rehabilitation agency actually required that the ILC put on additional
board members of the rehabilitation agency's choosing.  The director was
also told that she had to spend more time at the center.  Because the
rehabilitation agency's findings were in truth accurate and because the
center director was not "squeaky clean," she had to back off from
statewide systems advocacy.

In another example, a large center was strongly involved in systems
advocacy with its state and provided technical assistance to other ILCs in
the state.  The center received several requests for technical assistance
regarding financial record keeping and reports.  Soon after providing the
technical assistance, the center was informed that its financial consultant
should be relieved of her responsibility.  Upon refusal, the ILC was
"randomly" audited, as were two other centers to whom the consultant had
provided assistance.  During the audit, nothing detrimental was found at
the center in question, nor the other two centers.  As a result, the center
maintains its high systems advocacy profile and continue to provide
consultation on financial management.

The reality is that advocacy activities can sometimes open the door for
greater scrutiny from funding sources.  Therefore it is imperative that we
administer tight ships.  We must get used to being "audited to death."  Our
tight ships should be squeaky clean.

Complying with Restrictions on Lobbying

An important step that should be taken when planning a center's systems
advocacy activities is to review restrictions on lobbying that are imposed
by the Internal Revenue Service for nonprofit organizations with a
501(c)(3) status.  December 4, 1987 issue of OMB WATCH the tax rules
regarding lobbying by nonprofit organizations were summarized:

     Under current law, 501(c)(3)s are permitted to engage in lobbying
     activities.  For most non-profit organizations, 20 percent is an
     adequate lobbying expenditure allowance--even including what
     IRS calls the "associated costs" of lobbying:  staff time,
     information gathering, out-of-pocket expenses, etc.  But within this
     overall lobbying limit is a much tighter restriction:  Whatever
     amount an organization spends for lobbying, no more than 25
     percent may go for "grass roots" lobbying--as when an
     organization asks its members and other people to contact
     legislators on its behalf, rather than contacting them directly.

LOBBYING LIMITS FOR TAX EXEMPT ORGANIZATIONS

Exempt Purpose      Allowable      Maximum Lobbying
Expenditures        Percentage          Expenditure

$500,000 or under        20%            $ 100,000
$500,000 - 1,000,000     15%              175,000
$1,000,001 - 1.5 mil.    10%              225,000
Over $1.5 million        5%             1,000,000

     Note that lobbying limits are additive:  An organization with
     $600,000 in "exempt purpose expenditures" (including lobbying)
     could spend up to $115,000 for lobbying (20 percent of the first
     $500,000 plus 15 percent of the next $100,000).  If all $115,000
     were spent for lobbying, no more than $28,750 could be spent for
     "grass roots" lobbying (25 percent of $115,000).

Need to Determine Advocacy Priorities

The challenges and problems of systems advocacy do not end when an
ILC is able to devote a significant portion of time and resources to
systems advocacy; they just change.  The struggle switches to making
optimum use of limited time and resources.  The question then evolves
from can we do systems advocacy to how much can we do?

The most common trend and consequent problem is to take on too many
issues.  This overload results in a lack of focus and unclear goals and
objectives.  The ILC must prioritize the work and realistically project the
time it will take.  Often, the time needed to work on an issue is
underestimated.  In addition, the payoffs of the time expended on an issue
have to be constantly weighed.

Not only does an ILC have to be clear about the time involved, but also
about the advocacy goals and objectives.  That is, realistic desired
outcomes need to be clearly stated.  If this is not the case, there can be
much confusion and vagueness as to whether or not the effort was worth
the time expended.

An ILC needs to look at the number of issues it can effectively
concentrate on at one time and if the issues are local, state, federal, or a
mix of all three.  The questions sound easy, but the decisions are not.

The task of selecting the most appropriate advocacy activities with the
biggest payoffs must be taken seriously.  This selection process requires
careful planning and use of information about the primary advocacy needs
of the community.  Choices must be made between statewide and national
efforts benefiting large groups of people with disabilities and activities
supporting the interest of smaller local groups.  At the same time, ILCs
must retain sufficient time for responding to "crop-up" issues, that is, the
advocacy needs of an individual or an informal group seeking assistance
on a particular systems issue.

Described below is an example of a process that the Westside Center for
Independent Living (WCIL) in Los Angeles has implemented in order to
give structure to its systems advocacy approach and to select high pay-off
activities.  This process, which is constantly being refined, is WCIL's
method of critically examining what we should get involved with and
what we should not.  Each of these will be discussed below.  It includes:

--Setting major advocacy issues;
--Dealing with crop-up issues;

--Prioritizing and monitoring activities with outside organizations;

--Maintaining contact with elected representatives;

--Developing position statement; and

--Disseminating information about Community Successes and Advocacy
Impact.

The process is conducted by an advocacy planning group, which meets at
least once a month, consisting of the executive director, services manager,
community advocate, representatives of the board of directors and staff,
and representatives from consumer advocacy groups.

Setting Major Advocacy Issues

At the beginning of each fiscal year, goals and activities (clearly stated
objectives, realistic desired outcomes) are identified.  These goals and
objectives are derived from analyzing information from various sources
such as consumer needs assessment and satisfaction surveys, consumer
concerns surveys, summaries of public disability-related hearings at the
local and state levels, and input gathered from WCIL direct service
providers.  Once this information is obtained, the advocacy planning
committee uses the following guidelines to make decisions regarding what
involvement, if any, is appropriate for WCIL:

--Is the issue related to an already stated primary WCIL consumer good or
systems advocacy goal?

--How will the issue affect WCIL consumers?

--How many of WCIL's consumers will be affected?

--Who else is working on the issue and are they able to deal with the issue
adequately?

--Do they have sufficient expertise and a solid independent living
philosophical orientation?

--Does the above group need primary or secondary assistance?

--How much of WCIL's time would be involved?

--Who can/will take primary responsibility at WCIL for coordinating and
monitoring activity around the issue?

Monthly, the advocacy planning committee monitors progress towards the
selected goals and objectives as well as discusses any modifications or
refinements in the advocacy strategies that are being used.
Dealing with Crop-up Issues

At WCIL, we have found that having a process to decide if and how we
would get involved in advocacy crop-up issues was critical.  Crop-up
issues are those advocacy issues that are not included in WCIL's major
advocacy goals.  These issues crop-up daily and include an array of topics
such as:  needing to get people out for a rally related to demonstrating
against the projected closing of county health clinics, projected cuts in
funds for the state attendant program, a newly planned mini-van transit
service for the downtown area which is not accessible, etc.  The more
involved an ILC is in systems advocacy activities, the greater the
likelihood of a continual bombardment of crop-up issues.  When
committee members present crop-up issues, the guidelines detailed under
"Major Advocacy Issues" should be addressed in the discussion.

Prioritizing and Monitoring Activities with Outside Organizations

A solid systems advocacy approach should involve networking--that is,
collaborating with local, state, and national advocacy and service
organizations which are working on related activities.  (For a detailed
discussion of networking, see "Independent Living Networks," below.)
Similar to the crop-up issues, networking activities tend to escalate over
night.  An ILC could easily devote every waking hour to having
representatives attend some networking activity; ILC staff and volunteers
could easily spend all their time at community meetings.  To deal with this
challenge, WCIL's advocacy planning committee devised a method for
critically reviewing and prioritizing these activities:

a.  Prioritize the list of activities by category of WCIL involvement: 
administration, direct services, advocacy, or some combination of these. 
This prioritizing also includes evaluating the quality of the meeting or
activity using the following criteria:

     --Information:  Is it helpful or can it be obtained elsewhere?  Does
     it relate to WCIL services and/or advocacy activities?

     --Networking contacts:  Will contacts be helpful in providing
     consumer services and referrals or in pursuing identified advocacy
     priorities?

     --Time:  Are the payoffs equal to or greater than the cost of travel
     and participation?

b.  Re-evaluate and agree on network priorities at the beginning of each
fiscal year.

c.  Assign staff or volunteers to attend.

d.  Monitor reporting and information dissemination to WCIL staff and
volunteers (community meetings/advocacy impact report).

e.  Ensure that reports and minutes are circulated to appropriate
individuals and kept on file by a designated individual.

f.  If a recommendation comes to the advocacy planning committee that
meetings should no longer be attended, the committee evaluates the
recommendation and decides if attendance is to be discontinued.

Before we developed these guidelines, we had often been very unclear
about our major goals and determining the potential payoffs in terms of
which activities to choose.  For example, we are committed to insuring
that our community has full accessibility on the fixed route bus system. 
We therefore devoted several years to working with and eventually taking
a leadership role on the citizen's advisory council of the Rapid Transit
District.  In looking at our time expenditure, we realized that it was taking
15 to 20 hours a month of the community advocate's time.  The payoff for
this time investment was minimal.  It was decided that this "token" group
was not the route to achieving full accessibility.  We concluded that a
more radical approach outside the system would be more effective.  Had
our process for analyzing the payoffs for participation been in place
sooner, WCIL probably would have had more results for the amount of
time invested.

Developing Position Statement

The effectiveness of a center's systems advocacy efforts is enhanced by
the existence of formal, written statements of the center's position on key
issues.  At minimum, these position statements should include
identification of the issue, position being taken by the center, a rationale
for the center's position, and a person to contact for more information.

Using Spokespeople with Disabilities

It is imperative that people with visible disabilities and expertise on
various issues are used for public/media presentations of the center's
policy positions.  People with disabilities must be the identified leaders of
their own movement.  Part of that responsibility is to serve as role models
in every aspect of ILC activity.

Maintaining Contact with Elected Representatives

At WCIL, elected representatives are contacted by designated staff and
board members for a variety of reasons including:

--Issuing invitations to visit WCIL if they have not already done so or if it
has been a long time since their last visit;

--Reinforcing our advocacy profile with individuals who sit on or chair
committees where key disability issues are dealt with;

--Educating representatives who do not appear to be informed about or
sensitive to disability issues:

--Requesting support of or opposition to specific legislation, regulations,
budget items, etc.;

--Authoring or co-authoring a bill;

--Improving relationships with representatives' aides who are not using us
for disability related constituent problems or have unrealistic expectations
of what WCIL can do;

--Updating representatives' aides on the scope of our services;

--Creating relationships with representatives and their aides so that when
WCIL needs them they know who we are, what we do, and that we are a
credible organization .

Contact is maintained with all elected representatives at every level of
government in WCIL's service area.  To document this contact, we
developed an "elected representative contact" form, (see Appendix) which
is reviewed periodically .

Tracking and Communicating Outcomes

In this day of increasing attention to documenting the effects of what we
do, it is vital that ILCs pay attention to documenting and demonstrating
not only outcomes realized by individual consumers but also outcomes
related to the efficacy of advocacy activities.  This task takes on even
more importance given the charges being voiced by disability activists
directed toward what they see as ILCs' lack of involvement in systems
advocacy.  Many ILCs are very involved in advocacy but fail in carefully
tracking and communicating advocacy outcomes.

Systems advocacy does not occur in a vacuum; that is, ILC staff and
volunteers are typically not the only group pushing for reform or change. 
Therefore, ILCs have commonly been reluctant to take credit for changes,
such as curb cuts, improved or increased building accessibility, etc.  We
must, however, take credit for these activities.  We have to justify our
advocacy efforts, our abilities to affect the big picture.  We must
demonstrate how the environment will better accommodate people with
disabilities as a result of our efforts.  If we who operate ILCs do not
examine results and outcomes of our efforts, then how will we know that
we are getting to where we want to be?

ILCs must also pay more attention to communicating results of advocacy
efforts, even though we cannot always take major credit or claim full
responsibility.  It is perfectly appropriate to say that we participated in and
(when the case) heavily supported efforts which had desired results, such
as increasing the number of curb cuts in the city, or obtaining a written
agreement from the board of directors of the local transit authority that all
buses will be lift-equipped by a given date.  These claims do not
misrepresent our participation, and they give the ILC a share of the credit. 
In this regard, it is imperative that responsibility for monitoring and
evaluating a center's systems advocacy efforts be assigned to a specific
individual or group, i.e., the community advocate supervisor or advocacy
committee of the board of directors.  Only when this monitoring and
evaluation occurs can we claim with certainty credit for the gains that are
made.

Mary Ann Lachat and her colleagues at Center for Resource Management
developed the following list of types of advocacy outcomes for use in a
management information system for independent living centers.  Listed
below are just some of the types of advocacy outcomes which can be
tracked by ILCs.

--Removing community barriers in public buildings, hospitals, airports,
churches, temples, restaurants, stores, hotels, motels, social/recreational
facilities, educational sites, parking, restrooms, curb cuts, and sidewalk
improvements.

--Increasing availability of essential resources, including benefits,
equipment, and services at community, state, and national levels.

--Developing advocacy capability of local consumer groups.

--Developing housing options.

--Securing equal access to all transportation options.

--Promoting public policy development and implementation.

Disseminating Information about Community Successes and Advocacy
Impact

At WCIL, we designate a staff member to be responsible for monitoring
reports of advocacy efforts.  This person is also responsible for insuring
that our advocacy successes are properly disseminated to the general
public, WCIL service constituents, etc.  through various public relations
channels (local newspapers, ILC newsletters, etc.).  In addition, the
advocacy planning group reviews reports and public relations activities
quarterly.

DEVELOPMENT OF NEW DISABILITY LEADERSHIP

Scarcity of New Leaders for the Movement

Many independent living and disability rights leaders have identified a
true crisis in our movement:  a void in the development of new leaders. 
This crisis has been characterized by a number of questions that are
frequently voiced concerning the independent living movement.  They
include:

--Why are the same individuals always called upon to present or to
advocate at meetings and demonstrations?

--Why are so few people being called upon to participate actively?

--Why do directors of independent living centers feel overwhelmed?  It
seems they are called upon daily to take the lead in yet another important
community advocacy issue.

--Why are so many ILC executive directors burning out?

--Why has there been such a proliferation of ILC executive directors who
do not have disabilities?
--Why are ILCs having problems recruiting people with disabilities for
leadership positions?  It seems either qualified people have pursued other
goals or directions or those who do apply for positions have very low skill
levels.

--Does the absence of qualified people with disabilities reflect the
movement's failure to develop new leaders or does it reflect the
movement's success?

The scarcity of qualified people with disabilities most likely reflects both
failure and success, and this absence contributes to the problems identified
in all of the questions listed.  The movement has certainly been successful
in mainstreaming people with disabilities, but the movement's leaders are
guilty of ignoring one of their most important objectives:  that of
grooming tomorrow's leaders.  It takes time and patience.  We can always
do things more quickly ourselves, but if there is going to be "a movement"
after us, then we must groom people to ensure its existence.  Only with
new leadership can the movement continue to be effective.

In Order to Get Power We Must Give Power

Disability activists and ILC directors and staff sometimes act as if they
represent the disabled community and often unconsciously discourage or
intimidate consumers from trying to do so themselves.  When executive
directors and ILC staff represent the disabled community by, for example,
testifying at a hearing on behalf of "the community," we may be doing a
disservice.  An alternative course, such as going with consumers
especially concerned with the issue and testifying or acting together may
result in developing a new cadre of advocates as well as presenting a more
effective presence at hearings.  Disability activists need to be sensitive to
this dynamic.  We need to nurture, watch, and be patient while these new
advocates develop into strong and viable voices for the disabled
community.  Sometimes the process can be very slow.  Patience and
support are the key factors!

Disability rights advocate Phil Calkins says:  "In order to get power, we
have to give power, and this seems rather unnatural in going against
human needs.  But for this movement to thrive, we need to expand our
resources, share the power and cope with our own ego problems and
jealousy.  The payoff is tremendous, and the total community becomes
empowered.  Leaders must give power to members (in the form of offices,
titles, and responsibilities)....  Leaders who don't share power not only
restrict organizational growth but also perpetuate the myth that people
with disabilities are not qualified to handle responsibility."  Another
activist, Gordon Anthony, believes that the only true leaders are those who
have many followers.  He believes "power is based on followers.... 
Systems advocates who do not develop a grass-roots constituency at the
leadership development level may lack the political support to retain their
positions.  In years to come, emerging leaders with active supporters will
become the paid systems advocates" (Anthony, 1986).

Negative Effects of 'Turfism'

Unfortunately, the disability movement is like any other; there has been a
practice of protecting one's turf.  The reasons for this are understandable. 
Disability rights activists who have invested a tremendous amount of their
energy and worked long and hard to advance the cause of the movement
tend to be protective of their territory.  However, in the long run, this
territoriality will stifle creativity and have a negative impact on the growth
of the movement.  We need to guard against this common human
tendency.  We must put our energies into identifying people with potential
leadership among ILC staff, volunteers, the people who use ILC services,
and other people expressing interest in disability rights and community
advocacy.

We do not support each other adequately in part because we see rivals
where we should see allies and because we tend to view the available pool
of power and resources as static rather than expandable.  We must
remember that as we limit the opportunities of our peers, the total power
base of the movement will be diminished.  When leaders limit the
opportunities of their peers, the work load of the leaders expands to the
point where their jobs are un-do-able and, eventually, unbearable.  Our
energies must be channeled into grooming and training future leaders .

The future of the disability rights/independent living movement depends
on developing grassroots leadership more than anything else.  The
movement cannot rely on external power sources such as government
money, private money, and political alliances to drive it.  These external
sources of power tend to be unstable, undependable, or underdeveloped.

In summary, if we do not share the work, we will not create!  We can
develop effective, new, first-class leadership if we take the time to lay the
proper foundation now.  If we are vigilant in searching for people with
potential for this responsibility and if we have both patience and a method
for helping these people grow into new effective leaders, the powerbase of
the movement will be greatly enhanced.

Providing Support to Advocacy Groups

Development of new consumer leadership can take many, many forms.  It
can mean starting a new advocacy group or revitalizing an old group.  In
ILCs, commitment to an empowering and enabling style of consumer
intervention is an important factor.  This commitment must be
communicated when training new staff, volunteers, and board members so
they can sense "when to do for" versus when to lend support or assistance. 
An ILC's commitment toward recruiting consumers for staff and volunteer
positions can also encourage development of new consumer leadership as
it brings new people into the movement.

Another way to facilitate development of leaders is to pay attention to
weaker disability-related groups.  There are many existing advocacy
groups that are "limping" along, needing some infusion of new energies. 
The independent living movement has a tendency to ignore or discard
rather than to work with them to restructure and repower.  This
laissez-faire approach needs to be carefully scrutinized and rethought. 
These potentially important vehicles should not be ignored but should be
nurtured and strengthened.  This movement cannot afford to lose anyone!

Still another approach to building new leadership is creating new
advocacy groups where none have existed.  Examples of ILCs that have
made the commitment to building new leadership include ENDependence,
Inc.  in Norfolk, Virginia, and WCIL in Los Angeles.  In these centers'
independent living skills training curricula, self-advocacy training
programs are taught with the clear purpose of empowering, enabling, and
educating new consumers in the political system and in self-advocacy and
group advocacy techniques.  At WCIL, this approach had its inception
from staff frustration with regard to the lack of consumer participation in
advocacy activities.  Staff identified people whom they thought would be
interested in participating and would potentially make an ongoing
commitment to such a group.

WCIL's curriculum for assisting the "Westside Self-Advocates" includes,
but is not limited to, the following topics:

--Being an involved citizen.

--Making a difference:  methods of impacting the system.

--Registering to vote.

--Asserting your rights as a person with a disability.

--Writing effective letters and using the telephone effectively.

--Testifying at hearings:  how to present issues clearly and succinctly.

--Understanding how bills become laws.

--Understanding the different levels of government.

--Relating to elected officials:  establishing credible relationships, dealing
with feelings of intimidation, providing strokes when they do well.

--Prioritizing advocacy issues, which includes developing clear goals and
monitoring progress.

--Analyzing options for action.

--Weighing the costs and benefits of particular actions:  available
resources, cost in terms of time and effort expended, potential negative
consequences, potential gains and benefits.

--Conducting effective meetings:  preparing meeting agendas, keeping
minutes and records.

--Networking and coalescing with other groups.

--Analyzing the benefits of organized consumer involvement and the
differences between individual and organized consumer involvement.

--Understanding the dynamics of social movements.

Both the Virginia and the Los Angeles centers have developed
self-advocacy groups which are now operating more or less autonomously
in the community.  Both ILCs planned for this autonomy to occur.  The
Los Angeles group calls itself the Westside Self-Advocates.  The Norfolk
group, calling itself the Advocacy Action Group of Tidewater, is
preparing to incorporate as a separate entity.

Other centers are also actively encouraging development of advocacy
groups.  The San Francisco ILC has been instrumental in developing a
group of extremely active mental health consumer advocates.  The
Michigan State Association of ILCs received a Mott Foundation grant to
train new leaders statewide.  The Whole Person of Kansas City has been
successful in instituting sub-committees of volunteers which address
numerous advocacy issues, including need for personal care assistants,
improving community access, conducting community education programs,
and carrying out campaigns on issues such as housing, voting,
transportation, and media awareness.

ILCs have nurtured these groups by facilitating their development and
allowing the use of center phones, mailing lists, copying machines,
secretarial support, postage, space for meetings, occasional financial
assistance with transportation, and staff assistance as needed and
requested.  In other words, the centers have done much more than paid lip
service in developing new leadership and promoting advocacy efforts.

ILCs permitted these advocacy groups to make their own decisions, their
own choices and to define their own needs.  It is important to give these
groups the freedom to determine their issues and their strategies even
though these may not always fit the priorities of the ILC or be as effective
as we think they could be.  The primary goal is to develop new leaders
who will pursue disability-related advocacy issues.  These issues may or
may not fit into an ILC's priority advocacy issues.  In other words, it is
important for an ILC that is forming such an advocacy group to be
specific about its relationship with the group, short term and long term. 
This helps prevent confusion and misunderstandings related to who is
responsible for priority setting and decision making.

Taking an active role to maximize consumer involvement and
participation sometimes means that the center will furnish such things as
transportation, interpreters, and personal care attendants.  It means
needing to have a commitment to job restructuring, reasonable
accommodation, and flexibility.  Promoting consumer involvement also
means making some budgetary commitments to allow new and developing
advocates to attend disability-related meetings and independent living
conferences at the local, state, and national levels.  These individuals can
gain a tremendous amount of knowledge and skills by being exposed to
other people who have developed or are developing advocacy skills. 
Consider sending promising advocates to local community leadership
development workshops.  Last, but not least, do not forget to include these
individuals in your own internal ILC training activities.

Recruiting Consumers

The increased tendency to hire people without disabilities in management
as well as other ILC positions continues to weaken leadership
development within the movement.  It violates a basic independent living
philosophical principle of consumer control and undermines the abilities
of ILCs to play a forceful role in building self-reliance and a strong
activist voice in the disabled community (Fabrico, Seekens, and Fawcett,
1986).  This problem is of crisis proportions.

It is becoming more difficult to recruit qualified people with disabilities
for volunteer and staff positions.  Partially, this is a by-product of our
successful advocacy activities.  To the dismay of disability advocates, as
more and more of our peers and colleagues are mainstreamed, they are
seeking positions outside of disability-related arenas.  In the mid-1980s,
the movement away from human service careers is a dynamic that is
pervasive in our country.  Professions which come with money and
prestige seem to be the name of the game.  There is no question that
recruiting qualified individuals is becoming much more of a challenge and
requires an all-out effort.  Disability advocates are ambivalent about this
trend.  On one hand, it is exactly what they have been advocating for, but
on the other hand, it is frustrating that these individuals are not identifying
with nor putting their energy back into the movement.

Possible strategies for dealing with these recruitment challenges may
include the following:

--Recruiting student interns from high schools, junior colleges, colleges,
and graduate programs.  There are many capable students with disabilities
on campuses.  If we can get to them while they are still in the process of
seeking their education and get them excited about independent living,
then we can recruit some of these talented students for the movement.

--Recruiting student interns with and even without disabilities is not only
another way of developing new consumer leaders and getting them into
the movement early, but it is also a way of imparting independent living
philosophy to future service providers in a variety of professions.  We
should not expect, however, that all students with disabilities are going to
embrace the independent living philosophy and flock to our doors without
any effort on our parts.  We need to be in the colleges and universities,
spreading the word and actively recruiting the bright students who can
contribute to the independent living movement.

--Often cities have government-sponsored summer youth job programs
through which teenagers with disabilities can be recruited by the center for
subsidized summer jobs and later recruited for full-time jobs at the center.

--In many cities, the National Council on Aging sponsors a subsidized
work program for older people.  Older people with disabilities can be
recruited for subsidized jobs.  This is also a good resource for recruiting
additional staff without disabilities.

--Forming national, regional, state, and local recruiting networks, wherein
resumes of applicants with disabilities are distributed throughout the
network so we can make a concerted and timely effort to recruit these
people as they present themselves .

--Advertising upper management positions in national publications and
widely distributing these job descriptions to local, state, and national
disability related agencies, government offices, and colleges and
universities with strong 'handicapped student" programs or rehabilitation
counseling programs.

--Compensating paid staff appropriately is one of the most important
management challenges an ILC faces.  Salaries are usually ILCs' biggest
budget items.  Salary levels are typically well below those for other
comparable positions in communities where ILCs are located.  When ILCs
pay below average salaries, we can expect and will indeed experience
difficulty in attracting and retaining anyone but mediocre or marginal
people.  If ILCs choose to offer a salary structure at the bottom of the
community range (i.e., noncompetitive), then we can expect to attract
people who sometimes are unable to qualify or who only minimally
qualify for entry positions at other community agencies.

When we make a commitment to paying competitive salaries, we get and
retain better qualified people.  Paying competitive salaries also allows
ILCs to demand high quality performance from its employees.  Cheap
help is the most expensive help.

Personnel is an ILC's most important resource.  ILC staff can develop a
tremendous amount of expertise and valuable job skills.  If our salaries are
low, we can expect to have turnover as staff become "seasoned" and better
able to compete for higher paying positions in other organizations.  Yes,
we are committed to mainstreaming and agree that staff turnover can be
healthy, but when it occurs at an accelerated and exaggerated rate, it can
be extremely problematic to running a quality operation.  In order to
operate at maximum effectiveness, we have to be able to retain staff with
high quality job skills.  When staff are quickly "hired away" because they
are offered better salaries elsewhere, the ILC suffers tremendously as do
consumers who suffer as a result of interrupted services.  Re-hiring and
re-training are enormously expensive, both in terms of the drain on the
ILC's resources and the time that must be devoted to the training.

An advocacy issue which should be added to all ILCs' agendas is a
commitment to convincing their boards of directors and funding sources
that in order to offer the maximum quality and quantity of consumer
services, we must be able to attract qualified staff by being competitive in
the salaries and benefits we offer our employees.  Yes, we do have a
commitment to train consumers, but this should not be used as an excuse
for offering lower than the average wages that do not permit the ILC to
attract staff of high quality.

In the '60s and '70s, we expected and were able to attract staff who were
committed to a movement and who would accept lower than standard
salaries.  We have proved as successful in doing this in the '80s.  Our
attractive mission and our philosophy is no longer providing enough
incentive to retain talented staff at lower than average salaries.  This
means that a center's board and executive director will probably face at
some point the difficult issue of choosing between offering appropriate
salaries or cutting back services.  In such a discussion, I would choose the
former.

Preventing or Reducing the Impact of Burnout

Recruitment of good people is only the first step to involvement of
consumers; employee retention is equally, if not more, important.  One
aspect of retention, payment of an appropriate salary, was addressed in the
previous section.  Another issue of major concern for ILC staff and
volunteers related to retention is "burnout."  Burnout in any movement as
well as any human service agency is always an issue.  It is an issue of
great concern within an ILC where many of the staff and volunteers are
there not only because they feel the mission is important, but because they
live the cause of the ILC daily.  They live with disability and, hence, feel
more intensely the importance of the ILC and the continuation and
escalation of its services and advocacy efforts.  Individuals committed to a
cause tend to take on a great deal of work, and, in ILCs there is an
enormous amount of work that needs to be done, both in terms of direct
service and systems advocacy.  This tendency to take on large workloads
can contribute to burnout and is a significant problem for ILCs and the
movement.

Below is a list of several ways in which burnout can be prevented or
reduced:

--Insuring that all ILC people are given adequate time, if desired, for both
service delivery and advocacy activities; in other words, provide varied
activities for staff and volunteers.

--Insuring that staff and volunteers take advantage of in-service training
and outside training activities as frequently as is affordable, realistic, and
possible .

--Insuring that staff and volunteers have opportunities to become
reinvigorated and reassert their commitment to the IL movement through
contact with other ILC staff and disability rights activists at local, state,
regional, or national meetings.

--Insuring that ILC people are not devoting weekends and evening hours
to their work, and, when possible, counsel staff as to the dangers of "total
absorption" in such activities.

--Insuring that a certain amount of time at work is set aside for staff and
volunteers to talk about feelings and frustrations relating to dealing with
consumer problems, the workload, and advocacy issues.

--Sabbaticals:  time away from the job to pursue other interests can be
very invigorating.  Only academia seems to have a real commitment to
this method of preventing burnout.  Hopefully, human service agencies
will follow.  Maybe ILCs could lead the way!  Of course, in order to do
this, many questions would need to be addressed, such as:  How long
could a position go unfilled?  Who would do the work?  What about
meeting the obligations of funding contracts?  Could the ILC offer paid
leave?  What about a staff exchange program with other ILCs?

--Promoting understanding among activists about the various stages that
movements go through--the fact that social movements take years and
usually decades of commitment and follow through!

Successful Image

Just as ILC salaries and benefits need to be at competitive levels, our
image and the quality of our physical environment need to be improved. 
Our centers must have an image of purpose, productivity, power, and
success.  People like to be associated with successful operations.  Seedy
offices do not communicate success, and are not suitable in the '80s as
they were in the '60s.  Today, coffee stains, ripped carpet, and crumbling
ceilings speak of a slipshod, second-class place that is barely making it. 
This is hardly the message we want to pass on.  As we work to ensure that
people with disabilities are not given second-class treatment in society, we
should also work to keep our centers from being seen as second-class
operations.

A sure way to insure effective advocacy and consumer control is to pick
out your best and most promising advocates, staff, and volunteers with
disabilities and have them cloned.  Unfortunately, this service is not yet
available.  However, it has been heard through the grapevine that a
southern California ILC is seriously and actively investigating this
potentially lucrative business venture!

ISSUES NEEDING FURTHER ATTENTION AND DEBATE

The remainder of this monograph will touch upon some of the "hot" issues
currently being debated among ILCs.  There are as yet no definitive
answers nor a consensus on these issues but they deserve mention and
continuing debate.

Amount of Time and Resources to Devote to Systems Advocacy

This question is a classic ILC struggle.  ILCs have increasingly been
confronted with the conflict of how much time and resources to spend on
systems advocacy activities and how much to spend on direct service
delivery (which includes consumer advocacy), since either focus could
easily absorb all available resources--financial and personnel.

Many people in the field believe ILCs should be involved in both service
delivery and systems advocacy.  Provision of direct services is one of the
ways ILCs become very effective and credible advocates because service
delivery enables staff to have a continuing update on the array of systems
problems needing advocacy attention.

Some ILCs have dealt with this question of proper balance by making
recommendations to their boards and having their boards define the role
the center should play according to specific needs of the community.  The
ILC then develops resource allocation plans which correspond to specified
board priorities.  Other ILCs have made these decisions at the
administrative level, that is, the executive director and key staff members
decide on the extent of effort the center will commit to systems advocacy
and service delivery.

It is my opinion that ILC's are not devoting enough time to systems
advocacy issues.  ILCs should move toward a more equitable resource
split between direct services and advocacy.  If we decide to follow this
course, several questions arise.

--How do we measure advocacy activities?

--What criteria should be used?

--Do we separate measurement of individual consumer advocacy from
systems advocacy activities?

--How can we collect this information?

--Will collecting this information be more time consuming than useful?

--And, most importantly, what funding sources besides privately raised
funds will support systems advocacy activities?

What Constitute Representative Consumer Input?

There are additional questions about obtaining information on advocacy
needs of consumers which must be considered when center leaders
deliberate on a plan to implement a systems advocacy program for the
center.

--How does an ILC determine what constitutes representative input from
the community, from its consumers?

--Does the ILC really know what the community is identifying as major
advocacy issues?

--Is the board made up of primary consumers (people with disabilities who
directly use the ILC services) or is the board made up of secondary
consumers (people with disabilities who only indirectly benefit from the
ILC's advocacy activities)?

--If the board is made up of the latter, does this constitute true consumer
input?

--Does the ILC take on what it thinks the issues are or only those subjects
or activities with which they deal more comfortably?

Who is Responsible for Systems Advocacy?

Some independent living leaders believe that systems advocacy should be
integrated into all center job descriptions.  Others find that this approach is
not adequate for effective and consistent advocacy.  Some staff and
volunteers prefer to provide only direct service.  They feel that developing
expertise in systems advocacy would take substantial time away from their
direct service responsibilities.

ILCs deal with this issue in different ways.  Some insure that those who
express an interest in participating in advocacy activities be encouraged to
do so for a certain percentage of their time.  At several ILCs, the board of
directors assume primary responsibility for systems advocacy.  Other
centers have one or more staff persons, often called community advocates,
whose primary responsibility is to attend to systems advocacy issues.

Examples of the kinds of responsibilities community advocates assume
include:
--Reviewing and monitoring resource material detailing pertinent
legislation and public policy issues affecting people with disabilities.

--Developing plans to address legislative issues through letter writing
campaigns, activating telephone-alert networks, public hearings, etc.

--Insuring testimony is provided at public hearings and other public
speaking engagements by consumers and assisting consumers in
preparation of testimony.

--Acting as an ILC liaison to consumer advocacy groups.

--Networking with other agencies to facilitate group actions when
appropriate.

--Informing staff of current issues which could have impact on services,
fund raising, and grant management.

--Monitoring various government agencies and other identified groups to
insure compliance with regulations, i.e., accessibility laws, the
Department of Housing and Urban Development procedures, etc.

--Attending various community meetings as a representative of the ILC.

--Functioning as an organized consultant/research person to consumers
regarding strategies for effective resolution of community and local
systems issues.

--Working with ILC staff to identify advocacy issues affecting ILC
consumers and other people with disabilities.

--Encouraging, recruiting and training volunteers with disabilities to get
involved in systems advocacy activities.

--Insuring substantial advocacy content in the ILC's newsletter and
contributing advocacy articles to other appropriate publications.

--And last, but never the least:  completing duties as assigned.

Qualifications typically asked for in a community advocate include:

--Proven experience in advocacy efforts (experientially based professional
vs. academically based).

--Good interpersonal and problem solving skills.

--Assertiveness

--Good training and community organizing abilities.

--Ability to identify innovative solutions.

--Effective communications skills, both oral and written.

--Life experience with disability as well as knowledge of and comfort with
the independent living movement philosophy.

It is my belief that all staff need to know that advocacy responsibilities are
part of their jobs.  Although not all staff are heavily involved in carrying
out advocacy-related activities, everyone is responsible for identifying
systems advocacy issues that are revealed as they assist consumers.  Staff
should be given both training and time necessary for them to develop a
process for conceptualizing and presenting systems advocacy issues to the
appropriate advocacy planning group at their ILC.

It is the staff's role to identify systems problems, for it is the service staff
who see the impact of other systems on the consumers first, through the
provision of direct service.  Staff should look for and pick up on areas
which are creating problems for consumers, problems which could be
improved with systems change to better meet the needs of our consumers. 
For example, if personal attendants were paid more than minimum wage,
had benefits and a career ladder, we certainly would not have the
difficulty we now have in recruiting and retaining them

Threat of Co-optation

An important systems advocacy issue which ILCs continually need to
monitor is careful selection of contracts and grants, since some of these
clearly prohibit any type of systems advocacy by any staff that are funded
under the contract.  Federal funds are becoming increasingly problematic
in this area.  ILC's need to weigh continually the contracts we compete for
and accept in terms of how they might impact our advocacy effectiveness.

Apart from prohibiting advocacy activities as part of the conditions of
accepting certain contracts and grants, many contracts carry the threat of
impeding or literally stopping advocacy activities.  For example, several
ILCs have administered or are now administering government-funded
attendant services programs.  These ILCs admit that the contracts present
real conflicts.  They find themselves in the position of administering the
very services which had been a major focus of their advocacy efforts. 
How can they intervene on behalf of their consumers to insure adequate
attendant services when they have contracted to do the job themselves? 
Where do the consumers go if the ILCs are the agencies which are not
delivering adequate services?

As another example, many ILCs have government contracts with their
city, county, and/or state.  Sometimes it becomes difficult and sticky to
advocate against that same entity when it is not properly and/or
thoroughly enforcing building access for transportation access codes.  If a
lawsuit is needed, will the fact that the ILC has a contract with that
government entity, which represents 40 percent of their budget, have an
impact on the ILC's decision to pursue the lawsuit?
Some contracts specifically forbid systems advocacy while others very
clearly state they will only support direct service to individuals.  This
underlines the importance of ILCs having discretionary funds (from fund
raising efforts) so they have sufficient independence to practice effective
systems advocacy.

CONCLUSION

Some disability advocates feel that ILCs should onlY be involved in
systems advocacy.  A strong, thought-provoking editorial in the
September 1985 issue of THE DISABILITY RAG describes the problem
and sounds a warning as follows: 

     The establishment encourages independent living's bastard mix of
     services and advocacy.  It knows that, as long as we struggle to do
     both, we can do nothing of great social significance.  Trying to
     hold all the strings, we simply don't have the time to concentrate
     on real social change.

     As long as we try to provide services--something we can never do
     adequately, even though our approach may be philosophically
     sound--we will be targets for our own group's dissatisfaction.

     When our meager staffs, with little training and less money, fail to
     meet the needs of all our would-be clients, the clients fight the
     centers.  Great.  Disabled people vs. disabled people.  It's the old
     trick:  to keep 'em disorganized and powerless, get them to fight
     themselves.

     Creating one's own parallel institutions to obtain what the
     oppressor society fails to provide:  that solution has lured many
     oppressed groups throughout our country's history.  And now
     independent living agencies have bought the bootstrap solution.

     It's the only solution the rehabilitation establishment has ever
     understood.  Little wonder independent living centers, now rehab's
     stepchildren, are buying into it, too.

     . . . Perhaps independent living was a necessary stage in the
     evolution of disability rights.  But we must be aware of its limits. 
     And we must move on.

From talking to people around the country who are involved in running
independent living centers, it is clear that all independent living centers
have not bought into this way of thinking.  On the contrary, many would
be happier if they could substantially increase the amount of time and
effort they are investing in advocacy activities.  Without question, one of
the most difficult problems facing people responsible for running centers
is achieving an appropriate balance between advocacy and service
delivery.

It has been my intention in writing this monograph to explore some
approaches through which advocacy can be more effectively and
efficiently incorporated into center activities.  There is, of course, no
single best way of handling advocacy in an independent living center. 
And, there is an ongoing need for attention to be focused on this subject. 
We need to find ways to pass on to one another our own successful
strategies and techniques.  I would very much appreciate hearing from you
about your reactions to the ideas in this monograph and approaches that
have worked for you.  Write me at:  Westside Center for Independent
Living, 12901 Venice Blvd., Los Angeles, California 90066.

I hope this monograph will encourage you to consider how your efforts in
advocacy can be made even more effective.

*         *         *

     "The radical invents the views.  When he has worn them out, the
     conservative adopts them."         --Mark Twain

REFERENCES

Anthony, Gordon W.  Informal discussion with the author.  June
1986.

Anthony, Gordon W.  VIEWING INDEPENDENT LIVING
WITH A CRITICAL EYE.  Presentation at Region 2 Independent Living
Conference.  Albertson, New York, 1983.

Balcazar, Fabrico, Tom Seekins and Stephen B. Fawcett. 
"Consumer Involvement in Advocacy Organizations."  In TEACHING
ADVOCACY SKILLS.  Vol. IV. 1986.  (Available from the Kansas
Research and Training Center in Independent Living, 348 Haworth,
University of Kansas, Lawrence, Kansas 66045-2930.)

Cain, Dan.  BOARD AND ADMINISTRATOR.  March/April
1986 (P.O. Box 208, Sioux City, Iowa 51102).

Calkins, Phil.  Panel on Developing Grass Roots Leadership. 
National Council on Independent Living Third Annual Meeting. 
Washington, D.C. April 13, 1985.

Dart, Justin.  Address at the National Conference on Independent
Living.  Washington, D.C.  1987.

Frieden, Lex.  Keynote presentation at the 40th Annual Meeting of
the President's Committee on the Employment of the Handicapped. 
Denver, Colorado.  April 15, 1987.

Funk, Robert.  "Self-Advocated Push Beyond Civil Rights." 
INDEPENDENT LIVING FORUM.  Vol. 4, No. 1, Winter 1986, p. 3.

Hooper, Ed.  "A Bed Society Has Made for Us All." 
DISABILITY RAG.  1987.  July/August 1987, p. 31.

Kailes, J.  DESCRIPTIVE EVALUATION REPORT ON MODEL
INDEPENDENT LIVING CENTERS.  Los Angeles:  Unpublished
document, 1986.  (Available for $1.00 from WCIL, 12901 Venice Blvd.,
Los Angeles, California 90066.)

Lachat, Mary Ann, Martha Williams, and L.  Diamond.  "The
Design of a Regional Design of a Regional Evaluation System for
Independent Living. THE NEW ENGLAND COALITION OF
INDEPENDENT LIVING PROGRAMS.  1984 (Available from Center
for Resource Management, 17 Winnacunnet Road, Hampton, New
Hampshire 03842.)

Nosek, Peg, Justin Dart, Jr., and Yoshiko Dart.  INDEPENDENT
LIVING PROGRAMS:  A MANAGEMENT PERSPECTIVE. 
Washington, D.C.:  Unpublished manuscript, 1981.  (Available from
Justin Dart, Jr., 907 6th Street, S.W.  #516C, Washington, D.C.  20024)

Nosek, Peg and Laurel Richards.  INDEPENDENT LIVING
NETWORKS:  DEVELOPMENT OF A NEW DIMENSION IN
ADVOCACY.  Houston:  ILRU Program, 1987.

Ragtime editorial.  "The Bootstrap Solution."  THE DISABILITY
RAG.  September 1985, p. 57.

"Ten Years Later:  IRS Issues New Lobbying Rules for
Nonprofits."  OMB WATCH, 1987, p. 3.

Williams, D. T. and F. D. McCaffrey.  "A Divided Lot."  THE
DISABILITY RAG.  May/June, 1986, p. 28.

ADDITIONAL READINGS

"Challenges of Emerging Leadership:  Community-based
Independent Living Programs and the Disability Rights Movement." 
Washington, D.C.:  The Institute for Educational Leadership, Inc., 1984.

Chastain, Sherry.  WINNING THE SALARY GAME.  New York: 
John Wiley and Sons, Inc., 1980.

Crewe, Nancy M. and Irving Kenneth Zola.  INDEPENDENT
LIVING FOR PHYSICALLY DISABLED PEOPLE.  San Francisco: 
Jossey-Bass, 1983.

Frieden, Lex.  "Understanding Alternative Program Models." 
INDEPENDENT LIVING FOR PHYSICALLY DISABLED PEOPLE. 
San Francisco:  Jossey-Bass, 1983.

Jaffe, Dennis T.  and Cynthia D. Scott.  FROM BURN-OUT TO
BALANCE:  A WORKBOOK FOR PEAK PERFORMANCE AND SELF
RENEWAL.  New York:  McGraw-Hill Books, 1984.

Lachat, Mary Ann. INDEPENDENT LIVING SERVICE MODEL: 
HISTORICAL ROOTS, CORE ELEMENTS, AND CURRENT
PRACTICE.  Hampton, New Hampshire:  Center for Resource
Management, 1988.

Moyer, Bill.  THE MOVEMENT ACTION PLAN:  A
STRATEGIC FRAMEWORK DESCRIBING THE EIGHT STAGES OF
SUCCESSFUL SOCIAL MOVEMENTS.  Francisco:  Social Movement
Empowerment Project, 1987.  (Available for $1.00 from Social Movement
Empowerment Project, 721 Shrader Street, San Francisco, California
94117.)

Shreve, Margaret L., Patricia A. Spiller, Eric L. Griffin, Nancy
Waldron, and Lynda Stolzman.  CONSUMER CONTROL IN
INDEPENDENT LIVING.  Hampton, New Hampshire:  1988.

Winston, Stephanie.  THE ORGANIZED EXECUTIVE:  NEW
WAYS TO MANAGE TIME, PAPER, AND PEOPLE.  New York: 
Warner Books, 1985.

POLITICAL CONTACT REPORT FORM

Date of visit:

Name of representative visited or contacted:
U.S. Representative           U.S. Senate
State Assembly           State Senate

Other:

District:

Place of visit: 
District Office                    Capitol Office

If visit/contact was with staff member, please list his/her name and
position:

Reason for contact/visit:

What was the outcome of your contact/visit?

What kind of follow-up would be appropriate?

Other information/comments:

WCIL staff person(s):

ABOUT THE AUTHOR

JUNE ISAACSON KAILES has been the executive director of Westside
Center for Independent Living (WCIL) in Los Angeles since 1981.  She
has been both a disability rights advocate and a program developer in the
independent living movement since the early 1970's.  Prior to joining
WCIL staff in 1978 as head of the peer counseling program, Kailes was a
founding member of the center and served on its board of directors.  She
has long been involved in independent living on a national level, having
held a number of positions on the board of National Council of
Independent Living (NCIL) and chaired several key committees.  Kailes
has assisted ILRU in conducting a number of training programs with a
management focus, has published several disability-related articles and
book chapters, and has had a leading role in the California Coalition of
Independent Living Centers.  She has a master's degree in social work, and
prior to joining WCIL, worked as a psychiatric and medical social worker.

ACKNOWLEDGMENTS

The author wishes to thank and to acknowledge the following individuals
who reviewed and commented on this monograph: Gordon Anthony, past
executive director, D.I.A.L., Clifton, N.J., and director, Annual Fund,
University of Southern California; Helene Pizzini, executive director,
Disabled Resources Center, Inc., Long Beach, Calif.; Brenda Premo,
executive director, Dayle McIntosh Center for the Disabled, Anaheim,
Calif.; Maggie Shreve, past executive director, The WHOLE PERSON,
Kansas City, Mo., and current administrative director of the National
Council on Independent Living; Jackie Tatum, Aliza Barzilay, and Pat
Luboff, all from Westside Center for Independent Living, Inc., Los
Angeles, California.