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.
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.
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
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
--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
b. Re-evaluate and agree on network priorities at the beginning of each
c. Assign staff or volunteers to attend.
d. Monitor reporting and information dissemination to WCIL staff and
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
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
--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
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
--Analyzing options for action.
--Weighing the costs and benefits of particular actions: available
resources, cost in terms of time and effort expended, potential negative
usually decades of commitment and follow through!
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!
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
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
--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
--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
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
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.
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POLITICAL CONTACT REPORT FORM
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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.
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