Systems advocacy is an effort to change policies, rules or laws which
determine how services are provided. Whereas previous sections have dealt
with individual advocacy, this chapter will focus on changing systems.
There are
similarities between the two types of advocacy but there are also important
differences. Both types of advocacy involve use of the five phases of
problem solving: problem
definition, information
gathering, and goal setting, advocacy
planning, assertive
communication and follow-up.
Individual advocacy focuses on changing the situation of one person
to protect his or her rights or to improve individual services, systems
advocacy works to change the situations of a whole group of persons who
share a similar problem, or to change a service system. Systems
Advocacy can benefit many people and strives to prevent problems.
Because
systems advocacy works to cause change in organizations, service
systems or laws, it requires a long-term, sustained effort by a number
of people. It is harder to change how an organization or system treats
a whole group of persons than it is to change a decision made by one person
about the situation of another.
Although
it is more work, a systems advocacy effort is needed when policies or laws
cause the same problem for many people and the problems are expected to
keep recurring.
Systems advocacy is generally used to change the policies of agencies,
organizations or departments which are part of government or are established
by government grants or contracts and operated under laws or governmental
rules and policies. Frequently, these businesses provide unique services
to specific populations, and you can't just take your business elsewhere
if you aren't happy with the service.
The advocacy
effort could be directed at a local, state, or national agency and it could
be directed at changing a written or unwritten policy, or at changing a
law. Where the effort is directed will depend on the nature of the problem
and which organization has authority over the problem area.
The first step in systems advocacy is to find others who are experiencing
the same problem that you are. The group does not have to be large - at
least at this point. A small core group can involve others to support its
position later. The most important considerations are that the members
of the group agree on the nature of the problem and are committed to a
long-term effort to change the situation. Finding interested group members
is not hard. People often enjoy working as a team toward common goal. The
tough problem is keeping people involved over a long period of time.
Keeping members involved requires that all feel a sense of purpose.
To create this sense of purpose, there must be clear and specific goals
that are achievable in a reasonable amount of time and whose achievement
will affect people's lives.
If there are many goals, they should be prioritized and worked on
one at a time. Otherwise, members will lose their sense of purpose. So,
the first task of the group is to define the problem in specific terms
and to set a goal that, when accomplished, will help resolve that problem.
If the group has more than one goal, start by working on the one that has
the greatest potential for successful achievement since success will solidify
the group and create motivation for continued efforts.
The next step in your systems work is to gather
information. The information needed is Primarily the same type
needed to solve individual advocacy problems. Which agency has authority
to make needed changes? What laws, rules and policies govern the actions
of the agency? What rights and complaint procedures exist? What facts support
the need for change? It is very important to learn as much as possible
about the organization you wish to change. What is the formal hierarchy?
How are
changes made within the organization?
Who has power? Who has credibility?
How does the organization view itself?
Since organizations
are extremely resistant to change, you must identify ways in which
the organization could benefit from making the change. Causing the organization
great discomfort a public embarrassment is usually not sufficient to cause
real change. Organizations have great stability and can weather very heavy
stresses
In fact,
organizations typically react to advocacy efforts by doing
nothing, they just wait until advocates become tired and give up their
change efforts. To create real change, you must also create positive incentives
that make the change you are trying to achieve attractive to the organization.
To create a positive motivation for change, you've got t get to
know the organization well. Attend advisory committee meetings, public
hearings and conferences where you can meet staff of the organization.
Become familiar with other organizations and key individuals with whom
your target organization relates. Use your knowledge of these related organizations
to increase your knowledge of your target organization.
A key element of success is the creation of a visible as credible image
for your group. You can increase the visibility of your group in a
number of ways. Join forces with like minded organizations. You will have
to show them how they will benefit from the proposed change, and in turn
you will have to show a willingness to support allied groups in their own
efforts.
The specific actions you take to achieve your objectives, depend on your
issue. The actions you decide on should be of an overall Advocacy
Plan. This planning form can be used, perhaps with modifications,
to plan your systems effort. Developing your plan, bear in mind that you
are not likely to see any real changes in a single negotiation session.
You should view the first session as a success if you are able to define
problem and establish your knowledge of the issues and commit to a long-term
effort.
It is not a good idea to accept an initial solution proposed by
the other party too quickly. Even if it looks at face value, it may be
designed to pacify more than to create any real change. If you find your
group in this situation, take time to study the offer since you do not
have to commit to a solution until you are ready. On the other hand, no
proposed solution carries a guarantee of success. In many situations, wisest
course is to agree to a proposed solution on a trial bases, being sure
to establish criteria which will be used to assess success and a time frame
for reviewing the success of the proposed solution.
A systems advocacy effort is a demanding, challenging, and exciting
undertaking. It demands care, thought and commitment but the payoffs are
well worth the effort. As a novice systems advocate you need not feel alone.
Consultation and technical assistance are available from established advocacy
groups and agencies such as Protection and Advocacy agencies.
Many
Protection
and Advocacy agencies have a Systems Advocacy Unit. The unit identifies
systems issues which have an impact on persons with disabilities, develops
strategies for changes and works with other agencies and individuals to
bring about changes in laws, policy and systems practice designed to benefit
persons with disabilities.
Many people experience considerable difficulties when trying to obtain
needed Assistive Technology devices and services through systems
such as Medicaid, insurance, special education and vocational rehabilitation
(VR).
A school may not provide services agreed upon in the IEP in a timely manner.
Medical insurance may refuse to fund AT even though policy / regulations
require coverage of quipment or services.
Medicaid may deny full payment for individuals with dual insurance eligibility,
or may deny payment for customized devices.
Individuals living in nursing homes may not receive adequate AT services
to address their independent living, mobility and communication needs as
required by state regulations.
VR may not provide timely AT services resulting in lost job opportunities
due to a lack of assessment and planning, a lack of service providers,
or a lengthy procurement process.
WATA can connect individuals
with resources who provide consultation, advocacy, and legal representation
for these and other Assistive Technology issues.
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