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Advocacy in Genetics: A Teaching Guide and Workbook

Creating Change Through Advocacy

The HGP offers to provide humankind a chance, for better or worse, to control our and others’ lives. Yet without advocacy to direct good public policy, we may find ourselves in no better place. The rest of this document provides tools to help you learn how to process, prioritize, and resolve possible challenges we could face as a result of the HGP.

Advocacy and this Manual

Advocacy is acting with or on behalf of a person or a class of people to promote a change in the practices, policies, and behaviors of third parties to promote a desired goal. It is a truism of advocacy that efforts should be made in the least intrusive manner, beginning with the lowest level of staff in an organization who has the authority to make the desired decision to meet a goal. If the goal is to assist an individual, then the strategies necessary to achieve the desired outcome are "individual" focused. If the goal were to assist a class or group of people, then the advocacy strategies would be "systems" focused.

Multipartite Advocacy Model

To be effective in your advocacy effort, first you must define where your efforts would be most fruitful. Dr. Elizabeth Monroe Boggs proposed the multipartite advocacy model in the 1970s. As the parent of a son with mental retardation, Dr. Boggs was active in the protection and advocacy movement that precipitated many federal laws to aid people with disabilities, such as the Developmental Disabilities Act and the Individuals with Disabilities Educational Act. The multipartite advocacy model was created to define the various roles that each person or entity could play in protecting individuals with developmental disabilities. In Advocacy Systems for Persons with Developmental Disabilities, Dr. Boggs wrote:

The protection and advocacy of individual rights...must give attention to individual concerns, complaints, and deprivations. It is not enough to generalize about the potential harm to [a] class…or about [their] rights. If there is a need for special protection for members of any minority, there is also a need to consider minorities within that minority, right down to the minority of one. At the same time, systems or class advocacy is an attractive shortcut to increasing the cost-effectiveness of limited dollars when measured by the number of people whose lives are touched...Each type of advocacy (professional, legal, lay, and protective) may be seen as having individual and collective aspects. The proposed conceptual framework recognizes and supports both.

Components of the Multipartite Advocacy Model

The multipartite advocacy model defines four advocacy prototypes. The purpose of these prototypes is to guide individuals and groups in determining where they can realize the greatest impact for their efforts.

Lay Advocacy

Lay advocacy consists of informal and persuasive actions; it is often done outside of a formal system. The goal of lay advocacy seeks some type of social and/or political outcome.

• Individual lay advocacy efforts are most effective when done by members of an affected group and/or their parents, guardians, and friends. These efforts strive to effect change for a specific person. A parent working to improve the education their child is receiving in school is an example of individual lay advocacy.

• Systems lay advocacy efforts are most effective when done by entities organized to act with or on behalf of a group of people. These efforts strive to effect change for a group of people. AARP (American Association of Retired Persons) is an example of a systems lay advocacy entity.

  Legal Advocacy

• Legal advocacy consists of formal and authoritarian actions; it is often done outside of a formal regulatory and/or service system. The goal of legal advocacy seeks some type of legislative and/or legal/class action outcome.
• Individual legal advocacy efforts are most effective when done by private attorneys, legal services, or other legal entities. These efforts strive to effect change for a specific person. A private attorney filing a lawsuit on behalf of an individual is an example of individual legal advocacy.
• Systems legal advocacy efforts are most effective when done by congress, legislatures, and legal class actions through the judicial system. These efforts strive to effect change for a group of people. The United States’ Congress’ creation of OSHA (Occupational Safety & Health Administration) is an example of systems legal advocacy.

  Protective Advocacy

• Protective advocacy consists of formal and authoritarian actions; it is often done within a regulatory or service system. The goal of protective advocacy seeks standard setting, licensure, and enforcement of regulations and codes in its outcome.

• Individual protective advocacy efforts are most effective when done by entry- to mid-level bureaucrats such as a social worker. These efforts strive to effect change for a specific person. A social worker intervening on a child’s behalf is an example of individual protective advocacy.

• Systems protective advocacy efforts are most effective when done by governmental agencies such as Department of Health. These efforts strive to effect change for a group of people. Department of Health staff developing and providing oversight of standards for commercial food preparation is an example of systems protective advocacy.

Professional Advocacy

• Professional advocacy consists of informal and persuasive actions; it is often done within a regulatory or service system. The goal of professional advocacy seeks to assure the availability of a service as its outcome.

• Individual professional advocacy efforts are most effective when done by entry- to mid-level staff, such as a nurse’s aide. These efforts strive to effect change for a specific person. A home health worker questioning apparent discrepancies in a physician’s medical orders for a specific client is an example of individual professional advocacy.

• Systems professional advocacy efforts are most effective when done by agency administrators. These efforts strive to effect change for a group of people. A nursing home administrator striving to see that her facilities go beyond the standard level of care is an example of systems professional advocacy.

 Where Do I Fit?

Advocacy Plan

After determining the type of advocacy that best fits your situation, a methodical approach should be used to determine the problem, goal, strategies, and consequences associated with your need. Any advocacy effort not governed by such a plan can become easily sidetracked, resulting in frustration for all parties involved. Also, as a rule of thumb, remember to gauge any plan you develop by asking, "What do I win if I win and what do I lose if I win?" Bear in mind that you may lose something, even if you win. Collaboration and compromise should be part of every advocacy strategy.

Steps to an Advocacy Plan

  Identify the problem – Problem Statement

1. What is the problem?

2. Who has the problem? You, a family member, a friend, a client? Or is it a class or group of people who has the problem?

3. What impact does this problem have on the individual or group? What injury or difficulty results from the problem?

4. What would solve the problem? Is there only one solution, or are there several acceptable alternative solutions?

5. Who causes the problem? Does an internal or external force generate the problem? Does an individual, or a policy, or the lack of a policy cause the problem?

 Desired outcome or decision - Goal Statement

1. What outcome does the individual or class need or desire to solve the problem?

2. What makes the desired outcome the best resolution?

3. What agency or institution will be impacted by your desired goal?

4. What policy, procedure, regulation, law, and/or court decision supports your proposed resolution? What policy, procedure, regulation, law, and/or court decision works against your proposed resolution?

 Who can make the decision to implement the goal?

1. What is the structure of the system you intend to impact? Do you understand that system? Do you know people who work in and/or oversee that system?

2. Who is the lowest-level person who has the authority to implement your desired goal? REMEMBER: Always start at the lowest level; only jump up the authority ladder (escalate) as necessary. Resist the urge to merely go to the person you know in the organization/business; Boggs’ model suggests starting with the person with the lowest level of authority to implement.

 Strategies

1. How are you going to reach your goal?

2. Who is going to do what? If more than one person is involved in implementing the strategy, will everyone have a "job"? What are your timelines in regard to your "jobs"?

3. Who is going to keep complete and detailed record of each action and timeline completion? How will this record be shared? How often will this information be shared?

4. Who needs to be informed and advised of your actions before you implement them and as they unfold? Allies? Opponents? How much will you tell and to whom?

5. Remember your goal. What are your acceptable compromises? How will you know if you are ready to accept a compromise?

6. Do you know your legal rights regarding your goal and strategies? Does your goal or strategy compromise anyone else's legal rights?

 Consequences

1. Determine positive and negative effects of your actions at each step.

2. Determine what you win if you achieve your goal, prior to implementation of strategy.

3. Determine what you lose if you achieve your goal, prior to implementation of strategy.

4. Determine what you lose if you do not achieve your goal, prior to implementation of strategy.

5. Determine what you win if you do not achieve your goal, prior to implementation of strategy.

 Determining when it is time to escalate.

1. Is the problem life threatening? If so, escalate quickly and jump as many levels as necessary to ensure immediate action.

2. Determine the timelines you are comfortable with, prior to action. Make sure these timelines are reasonable and that they allow the individual or system adequate opportunity to respond.

3. Inform all parties of your timelines at each level of escalation.