To partner with policymakers to provide a sibling perspective in formulating policies that will benefit people with disabilities and their families.
To partner with disability groups to advocate for federal policies that advances the opportunities of full inclusion and participation of people with disabilities.
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
- Policy proposals that promote full community inclusion and participation through long-term services and supports and siblings as caregivers
- Long-Term Services and Support
- Policy proposals that promote the full inclusion and participation of people with disabilities
Community Choice Act (H.R. 1670 and S. 683)
The Community Choice Act allows individuals and families long-term care options in services and supports by reforming Title XIX of the Social Security Act to end institutional bias in Medicaid funding. This act removes the institutional bias in Medicaid funding by promoting community alternatives for the delivery of long-term services and supports. To voice your support for this act or to learn more about the Community Choice Act, visit ADAPT or the 2010 Disability Policy Seminar Fact Sheet on the Community Choice Act.
Policy proposals that impact the caregiving role of siblings.
Lifespan Respite Care Act (P.L. 109-442)
The Sibling Leadership Network urges the full funding ($53.3 million) for the Lifespan Respite Care program in the FY11 Labor, HHS, and Education funding bill. In addition, the SLN proposes the inclusion of siblings in family trainings about respite care; access to information about available services and supports; respite worker and volunteer training and recruitment; and the development of specialized training to support siblings as new caregivers in times of transition. The Lifespan Respite Care Act provides competitive grants to states to develop coordinated systems of quality, community-based respite services for family caregivers of children and adults with special needs regardless of age and disability. To voice your support for this act or to learn more about the Lifespan Respite, visit ARCH National Respite Network and Resource Center.
Family Medical Leave Expansion Act (H.R. 1369)
The SLN supports the Family Medical Leave Expansion Act (FMLEA). FMLA provides wage replacement for family members responding to caregiver needs. The SLN proposes inclusion of siblings caring for a brother or sister with a disability in the FMLEA provisions. This included group should receive the wage replacement benefits in the same way as parents and other defined beneficiaries, as well as the entitlement to “school” involvement leave. Siblings should have increased access to training that enables them to provide necessary care for a brother or sister with a disability, without jeopardy to employment. To this end, sibling language should be added to the benefit of “meaningful involvement in training.” Provisions for the inclusion of non-parental family caregivers should be added in policy evaluation initiatives proposed in the FMLEA to develop an evidence base of this benefit.
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: The Arc of the United States.
Advocating For Policy Change
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.