Policy & Advocacy

The SLN has a Policy & Advocacy Committee that does work in the following areas:

  • Educates policymakers by providing a sibling perspective on policies that will impact people with disabilities and their families.
  • Partners with disability groups to advocate for federal policies that advance the opportunities of full inclusion and participation of people with disabilities.

Download the 2015 SLN Sibling Policy Brief here!

In 2008, the SLN White Paper was written to provide recommendations for research, policy & advocacy, and services and supports.

Interested in being part of the Policy & Advocacy Committee?
Contact: policy.inquiries@siblingleadership.org

Principles that guide efforts*

  • The term “family” should include siblings.
  • Siblings have a unique and under-represented voice in advocacy for and with their brothers and sisters with disabilities.
  • Policymakers and agencies must incorporate siblings into the collective discussion of the rights and supports of citizens with disabilities.
  • Siblings should be included in policy development, programmatic planning, services and supports.
  • Family support policy must enhance the quality of life of all family members.
  • There are millions of siblings who are an untapped resource who can, with the proper support and encouragement, make a positive impact in the lives of their brothers and sisters and others with disabilities.

*Source: Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J., & Dufresne, D. (2008). The Sibling Leadership Network: Recommendations for Research, Advocacy, and Supports Relating to Siblings of People with Developmental Disabilities


Influencing policy proposals on the long-term services and supports that enhance the lives of citizens with disabilities and the role of siblings as caregivers.

Tips on how to advocate for policy: Writing to a Member of Congress

Email is the preferred option for sending written communication to Members of Congress. E-mail is just as effective as a First Class letter and it is received immediately by the Member. Communicating by fax is also effective.

Some specific tips:

  • Try to stick to one typewritten page; two pages at most. If writing a regular letter, don’t write on the back of a page. If writing longhand, take care to write legibly. In e-mail, always use proper net etiquette (avoid using all upper case letters as this connotes shouting, etc.).
  • In a short paragraph, state your purpose. Stick with one subject or issue. Support your position with the rest of the letter.
  • If the subject of your letter is a bill, cite it by name and number.
  • Be factual and support your position with information about how legislation is likely to affect you and others. Avoid emotional, philosophical arguments. Don’t flame* or spam** legislators.
  • If you believe legislation is wrong and should be opposed, say so. Indicate the likely adverse effects, and suggest a different approach.
  • Ask for the legislator’s views and his/her support, but do not demand that support. Remember, Senators and Representatives respond to a variety of views, and even if they do not support your position on one issue or bill, they may support it the next time. So, ask for the legislator’s views and express that you look forward to hearing from them on this issue soon.
  • If writing a letter, make sure your name and address are legible. In e-mail, make sure your name, full address, and e-mail address are included.

If writing a letter, the suggested style is:
The Honorable ____________________
United States Senate 
Washington, D.C. 20510
Dear Senator _____________________

The Honorable ____________________
United States House of Representative 
Washington, D.C. 20515
Dear Representative ________________

(Begin e-mail by Dear Representative ____________ or Dear Senator _____________ )

Source: Disability Policy Seminar

Advocating For Policy Change

There is a free mobile app called icitizen that lets you track the issues that matter to you, look up your representatives, and communicate your views through polls.

The Genetic Alliance has collected great resources on advocating for specific issues. Check it out here!

Click on the organization’s link to view our partners’ public policy information.

Self-Advocates Becoming Empowered

Self-Advocates Becoming Empowered (SABE) is a national organization whose mission is to ensure that people with disabilities are treated as equals and that they are given the same decisions, choices, rights, responsibilities, and chances to speak up to empower themselves; opportunities to make new friends; and to learn from their mistakes.

Association of University Centers on Disabilities (AUCD)

AUCD is a network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families, and communities.

Disability Policy Collaborative

Disability Policy Collaboration (DPC) is the primary public policy arm of The Arc of the United States and United Cerebral Palsy.

Consortium for Citizens with Disabilities

The Consortium for Citizens with Disabilities (CCD) is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society. AUCD and DPC are members of the Consortium for Citizens with Disabilities.