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Expanding the Power of the Independent Living Movement

How to Influence Policy-Makers and the Policy-Making Process

Tips for Disability Policy Change Agents

The Need for Disability Policy Change Agents

The process of making public policy includes formulating solutions to problems of general concern to the public and transforming these solutions into law. Disability policy includes those laws specifically targeted at addressing the needs of persons with disabilities and their families and generic laws that address the needs of non-disabled persons as well as persons with disabilities. There is a need for people to get involved in the policy-making process (disability policy change agents) to ensure that out laws foster the inclusion, independence and empowerment of people with disabilities and their families.

Passion, anger, frustration and commitment are often necessary but not sufficient characteristics of a disability policy change agent. In order to advance progressive disability policy, an effective disability policy change agent must channel those emotions and beliefs and develop the skills and understanding described in this publication.

The process of developing, negotiating, securing enactment and overseeing the implementation of public policy is dynamic process. Rarely, if ever, do the same exact situations recur. Thus, it is impossible to describe a "how to" or "paint by the numbers" approach. There are, however, guidelines, principles and strategies that van guide one's actions.

Understand Historical Context
  • Research treatment of persons with disabilities (such as exclusion, segregation, and automatic referral by generic system to disability system)
  • Recognize intensity of feelings by persons with disabilities regarding why it's critical to develop new or modify existing policy based on historical treatment
  • Become knowledgeable about current policy framework and its strengths and inadequacies
  • Use understanding of historical context to explain the nature and scope for needed changes to current policy
Articulate Values, Principles and Goals of Disability Policy
  • Recognize the difference between the old v. new paradigm of disability policy (old paradigm-need to "fix" "defective" disabled person v. new paradigm-recognize that disability is a natural part of the human experience and the responsibility of society to fix the natural, built, social and political environment by providing necessary supports, services, and accommodations (civil rights model)
  • Recognize the goals of disability policy-equality of opportunity, full participation, independent living, and economic self-sufficiency
  • Equality of opportunity (individualization, inclusion, meaningful opportunity)
  • Full participation (empowerment, self-determination, informed choice at individual and systems level)
  • Independent living (skills, services, and supports)
  • Economic self-sufficiency (training, education, assistance and supports)
Understand Political Context
  • Determine the extent to which disability policy is partisan or bipartisan
  • Identify the key players and the role of the policy-maker you are trying to influence
  • Determine the nature and extent of controversy raised by particular issue
  • Determine the existence/strength of cross-disability coalition
  • Determine the strength of the opposition
Understand Policy-Maker's Needs
  • Self-interest (re-election, power, status among peers and interest groups)
  • Time (balancing priorities)
  • Trust (importance of developing long-term relationships)
  • Viable policy options (data and other supports justifying options)
Understand the Needs of Staff
  • Promote and protect boss
  • Help in sorting through avalanche of inputs to determine what is real and what is posturing
  • Help develop assumptions and present fiscal and program estimates
  • Help in identifying key players
  • Help in developing viable policy options, drafting bills, report language, floor statements, speeches
  • Help in developing political strategy
Understand the Role and Power of Organized Coalitions
  • Composition of the coalition (cross-disability, consumers and providers), and nontraditional groups (reaching beyond the disability community)
  • Cohesion (keep the disability community together)
  • Synergy
  • Skilled individuals performing varied tasks working together
  • Leadership (policy entrepreneur)
  • Responsibility (carrying out agreed on tasks)
Understand the Need for a Strategic Plan
  • Planned spontaneity (passion, anger, frustration are necessary but not sufficient to effectuate change, need to think strategically and act on basis of a plan)
  • Reality check (macro issues, past advocacy efforts and why change now possible, constraints on achieving success, capacities of coalition, and degree of opposition)
  • Identify the prize (short-and long-term goals and objectives)
  • Decide on overall strategy and determine how particular tactic (such as meeting with a policy-maker) fits in
  • Decide on appropriate vehicle such as modifying a statute, regulation, or guideline
  • Identify the key policy-makers who will assume leadership roles (heroes)
  • Control the dynamics of the debate (frame the issue to garner broad-based support and to create an aura of inevitability)
  • Develop favorable program and fiscal estimates
  • Present viable policy options based on research and program and fiscal estimates
Understand the Power of Personal Stories Tied to Policy Objectives
  • Telling personal stories in isolation doesn't work
  • Need to decide policy objective and how to frame the issue and then tie personal story to policy objectives and policy options
  • Best personal stories demonstrate positive impact of proposed intervention/change in policy (describe circumstances before and after intervention)
Understand That Who Delivers the Message is as Important (and often more important) Than the Message
  • Strategically select the spokesperson(s) who will have maximum influence over policy-makers
  • Ensure that message is presented in manner that recognizes the needs of particular policy-makers/staff
Recognize your Strengths and Limitations
  • Keep your eye on the prize-put ego aside
  • Don't agree to a policy option when not fully knowledgeable
  • Don't agree to a policy option on behalf of others you don't represent
Guidelines for Meeting with a Policy-Maker
  • Prepare for meeting
  • Get ready to meet with a policy-maker by following the guidelines contained in the Top Ten Tips on How To Influence Policy-Makers and the Policy-Making Process by Bobby Silverstein
Beware of filibusters
  • Don't be sidetracked by long introductions and chit chat because before you know it the meeting will be over
  • Goal is to control the agenda (policy-maker would prefer chit chat about mutual friends back home in the district and you prefer to accomplish your agenda)
  • Ask for picture at the end of meeting if possible (so doesn't interfere with advocacy objectives)
Describe meeting purpose/topic
  • Limit time period for introductions but use opportunity to demonstrate the status of participants (e.g., part of a disability group with 5,000 members which has a newsletter, go to same church)
  • Limit agenda items
  • Explain the subject matter of the meeting
  • Share personal stories and explain how they relate to policy objectives/options
  • Strategically select who will make the presentations
  • Get to policy-maker's heart-then get to his/her head
  • Frame the issue-explain why personal story is important by explaining how it impacts others (i.e., it is an issue of general applicability)
  • Share policy options
  • Share support for your position by opinion leaders the policy-maker trusts/respects
  • Explain the research bases for position
  • Offer to provide additional information for staff
Make specific requests of policy-maker
  • Explain why it is important for policy-maker to get involved
  • Request specific action by policy-maker (such as co-sponsor a bill, oppose a certain amendment, speak in support of or in opposition to an amendment, visit a program in the state, give a speech)
  • Ask policy-maker to articulate his/her position and suggest follow-up activities
  • Ask for the policy-maker's position
  • Solicit reasons/rationales for position
  • Be aware of nonverbal communication of policy-maker and staff
  • Offer to provide additional information
  • Propose a meeting or visit to program in home district
Take picture
  • Share with policy-maker distribution strategy
Give feedback to your organization's government affairs staff
  • What you said to the policy-maker
  • The policy-maker's response/reaction/concerns
  • The response/reactions/concerns of the policy-maker's staff
  • The nonverbal communications by the policy-maker and staff
  • What you promised to provide to policy-maker and/or staff in response to issues raised
Write "thank you"
  • Use thank you as excuse for summarizing the themes/major points raised at the meeting and your understanding of the policy-maker's position or needs (e.g., more information)
  • Ask government affairs staff what follow-up is appropriate
  • Take responsibility to carry out agreed on tasks
About Bobby Silverstein

Robert "Bobby" Silverstein, J.D., is the director of the Center for the Study and Advancement of Disability Policy (CSADP). He has more than 25 years of experience providing policy analysis, research and technical assistance to policy makers and negotiating and drafting public policy at the federal, state and local levels.

At CSADP, Silverstein gives keynote speeches; conducts advocacy training; assists disability groups and federal, state and local officials draft disability policy and conducts action-oriented research. His areas of focus include civil rights, education, work incentives, workforce investment and welfare reform from a disability perspective.

As principal advisor to Senator Tom Harkin (D-Iowa), chair of the Senate Subcommittee on Disability Policy, Silverstein played a central role in all important disability policyc legislation and numerous disability-related amendments to other bills concerning, health, civil rights, education and job training.

Silverstein received a B.S. in Economics from the Wharton School at the University of Pennsylvania and his J.D. from Georgetown University Law Center.

Silverstein training materials on CD Rom!

Bobby Silverstein's comprehensive training materials on how to become effective disability policy change agents are now available on CD ROM. The materials include PowerPoint overheads and handouts, memos, a published article on disability policy and comprehensive guides. These training materials apply whether you are trying to "educate" (influence) a member of Congress, a member of the state legislature, a governor, mayor or other elected official.

There is a $75 charge for the complete set of materials on CD ROM. For more information, contact:

Melanie Gabel
Center for the Study and Advancement of Disability Policy
c/o The Arc of the United States
1010 Wayne Avenue, Suite 650
Silver Spring, M.D. 20910
301-565-5472 (V/TTY)

Want to Know More?

This brochure is a collaborative effort between Bobby Silverstein, director of the Center for the Study and Advancement of Disability Policy, and ILRU. It is intended to provide an "at a glance" overview of effective legislative advocacy strategies. The points included here are discussed in more detail in A Congressional Insider's Guide to Effective Public Policy-Making, a three-booklet series written by Silverstein and produced by ILRU as a part of its Bookshelf Series.

For more information about the booklets, contact:
2323 S. Shepherd, Suite 1000
Houston, TX 77019
Phone: 713-520-0232

Substantial support for development of this publication was provided by the Rehabilitation Services Administration, U.S. Department of Education. No official endorsement of the Department of Education should be inferred.

The IL NET is a collaborative project of Independent Living Research Utilization (ILRU) and the National Council on Independent Living (NCIL), with funding from the Rehabilitation Services Administration.

ILRU is a program of The Institute for Rehabilitation and Research (TIRR), a nationally recognized, freestanding medical rehabilitation facility for persons with physical and cognitive 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.

This guide may be reproduced for noncommercial use without prior permission if the author and ILRU are cited.

The mission of the IL-NET is to provide training and technical assistance on a variety of issues central to independent living today--understanding the Rehab Act, what the statewide independent living council is and how it can operate most effectively, management issues for centers for independent living, systems advocacy, computer networking, and others. Training activities are conducted conference-style, via long-distance communication, webcasts, through widely disseminated print and audio materials, and through the promotion of a strong national network of centers and individuals in the independent living field. ..

Substantial support for development of this publication was provided by 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.

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Last Modified: 03-23-05