Putting advocacy rhetoric into practice

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The Role of the Independent Living Center

by June Isaacson Kailes

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)


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.

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

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


Series Editor


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



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


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


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




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


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

--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.
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,

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.

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

--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!

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

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

--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

--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,

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.

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

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


--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

--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

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


--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

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


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

--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

--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

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

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


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

--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

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!

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

--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

--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


--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


--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.
--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.

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

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


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


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


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.)

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.



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 PROGRAMS. 1984 (Available from Center

for Resource Management, 17 Winnacunnet Road, Hampton, New

Hampshire 03842.)

Nosek, Peg, Justin Dart, Jr., and Yoshiko Dart. INDEPENDENT


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


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.

"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


Jossey-Bass, 1983.
Frieden, Lex. "Understanding Alternative Program Models."


San Francisco: Jossey-Bass, 1983.
Jaffe, Dennis T. and Cynthia D. Scott. FROM BURN-OUT TO


RENEWAL. New York: McGraw-Hill Books, 1984.


PRACTICE. Hampton, New Hampshire: Center for Resource

Management, 1988.




Empowerment Project, 1987. (Available for $1.00 from Social Movement

Empowerment Project, 721 Shrader Street, San Francisco, California

Shreve, Margaret L., Patricia A. Spiller, Eric L. Griffin, Nancy

Waldron, and Lynda Stolzman. CONSUMER CONTROL IN

INDEPENDENT LIVING. Hampton, New Hampshire: 1988.



Warner Books, 1985.


Date of visit:
Name of representative visited or contacted:

U.S. Representative U.S. Senate

State Assembly State Senate
Place of visit:

District Office Capitol Office

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


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):
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.

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.

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