Let’s Talk About Self-Advocacy

By Sarah Davidson

Advocacy is a crucial part of supporting one’s brothers/sisters through the health care and educational systems, social interactions, and everyday life. Working with your brothers/sisters on self-advocacy skills and practices can support them to find their voice while working with many complex systems. Self-advocates exercise their rights as citizens by representing themselves and others. Changing the system to ensure the inclusion of individuals with disabilities is important and as a society, we have to evaluate if the people being supported are incorporated into the conversation. Policies put in place must include self-advocates to evaluate the practicality of the policies. For students, self-advocacy is a vital part of the educational system to ensure that they are receiving the accommodations they need and deserve.

Resources to support your brother/sister with self-advocacy skills: 

Self-Advocates Becoming Empowered (“SABE”): 

SABE is a national organization working to ensure people with disabilities are treated as equals. SABE offers a Self Advocacy Resource and Technical Assistance Center with a variety of activities that provide an opportunity for self-advocacy on many different platforms.

Self-Advocates Becoming Empowered has launched a self-advocacy start-up toolkit that includes activities focusing on “You Know Yourself Best!”, “Self Advocacy is…?”, and many other tool collections to help your brother/sister navigate self-advocacy. See these links for more details:

Massachusetts Developmental Disabilities Council (“MDDC”): 

MDDC developed a Self-Advocacy Leadership Series. The series is training that provides education and training support to people with disabilities to work to improve their skills in leadership and self-advocacy. This program seeks to connect people with disabilities to self-advocacy networks. For more information, click

Ways To Be a Self-Advocacy At Home: 

Supporting your brother/sister can be as simple as encouraging them to make small choices at home. While it can be scary to speak up for one’s self, it is crucial to support your brother/sister at home to make it clear that they have a right to a voice and a choice.

The Urgent Need to Advocate for Brothers/Sisters with Disabilities During COVID-19

Siblings are an integral part of the lives and caregiving of our brothers/sisters with disabilities. We have watched the nation react quickly to the coronavirus pandemic. Congress has passed three bills to help mitigate issues for all citizens; however, as with any legislation that is quickly implemented with little historical precedent, there are gaping holes.

The current bills do not adequately address the needs of people with disabilities, including their families and siblings. People with disabilities are considerably more vulnerable and, as a result, are disproportionately affected. 

Join The Arc of the United States and ask Congress to pass a bill that directly addresses the specific needs of our community including: 

  • Paid leave for caregivers. As siblings who are often caregivers, paid leave is particularly essential. The Family Medical Leave Act (FMLA) should recognize ALL family members, including siblings, in the emergency paid leave provisions. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions, including adult siblings.  
  • Funding for a Medicaid grant program to support access to home and community-based services (to combat institutionalization) and to support the direct support professionals (DSP) workforce. Congress should pass the Coronavirus Relief for Seniors and People with Disabilities Act.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. Direct support professionals must be designated as essential workforce so that they have access to the PPE and medical supplies they need.
  • Help for people on Supplemental Security Income (SSI) to access recovery rebates. People with disabilities on SSI are being asked to file needless paperwork in order to access economic stimulus payments. Congress should tell Federal agencies to use their existing authority to share data and file for people on SSI.

Learn more about The Arc’s response here

Contact Congress here.   

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