Uncomfortable Conversations : A Toolkit for Advocates to Address Uncomfortable Conversations in their State and become advocacy leaders . To read the full publication, click here.
NACDD Resources
Partner Resources
Self-Advocacy Resource and Techniology Assistance Center (SARTAC) – http://selfadvocacyinfo.org/
Self-Advocates Becoming Empowered (SABE) – http://www.sabeusa.org/projects/sartac/
Center for Parent Information & Resources: Best Practices in Self-Advocacy Skill Building – http://www.parentcenterhub.org/priority-selfadvocacy/
Alliance for Justice – Advocacy 101 https://nacdd.org/wp-content/uploads/2023/12/12072023-PW-Advocacy-101.pdf
Disability Scoop – Speak up: Your Guide to Self-Advocacy – https://www.disabilityscoop.com/2009/07/21/self-advocacy/4203/
Autism Self-Advocacy Network (ASAN) – https://autisticadvocacy.org/resources/
The Arc of the US – https://www.thearc.org/self-advocates
Self Advocacy Online – http://selfadvocacyonline.org/
Self Advocate Discussion Series
2023
This month we had guest speakers present about PCORI, the Patient Centered Outcomes Research Institute. What PCORI does is fund projects that try to better include the perspectives of people receiving health care into the health care they receive. In other words, some of their work is to make sure that people with I/DD are listened to by a medical professional when that person receives care.
Our guest speakers were:
Dr. Beth Malow, Vanderbilt University Medical Center, Department of Neurology, Co-Director of the PCORI grant and also directs the Autism ECHO and IDD ECO Projects
Susan Brasher, PhD, RN, CPNP-PC, FAAN is an Assistant Professor and Co-Director of the PCORI, at the Nell Hodgson Woodruff School of Nursing at Emory University In Atlanta GA.
Dr. Elise McMillan, Co-Director of the Vanderbilt Kennedy UCEDD and Senior Associate, Department of Psychiatry and Behavioral Sciences at Vanderbilt University in Nashville TN
Laura Coleman: Clinical Research Coordinator, SPARK for Autism Study, Marcus Autism Center/Emory University as well as an autistic adult.
The topic this time was Uncomfortable Conversations. Our guest speaker was Erin Prangley from NACDD. She gave a presentation on the need for uncomfortable conversations around disability, how to start those conversations, and how to communicate effectively.
Discussion Questions:
- What Uncomfortable Conversations do the people around you need to hear?
- What barriers have you faced around starting conversations?
- Have you gained anything after communicating around a difficult subject?
2022
Our topic was higher education. We discussed the different ways that Developmental Disabilities Councils support education and heard directly from Starr Bruner of the Georgia Council on Developmental Disabilities.
Discussion questions:
- Do you have a story to share about your education?
- Do you have any resources to share to help others with education, internships, or volunteering?
- Have you had any barriers to the education system or higher education, internships, or volunteering?
Definitions:
Higher Education: Education that is earned after high school. This can include colleges, universities, teacher-training schools, and technology schools. At the end, there is a degree, diploma or certificate that is
Post-Transition Secondary School: Only used in some states, these schools are focused for individuals with I/DD to help learn about local opportunities in their home states, community access, work, school, or volunteerism.
Trade School: A school that offers training in a particular area, such as computers, nursing, auto repair information technology, plumbing, painting, landscaping etc.
Volunteerism: Volunteering could include: helping at a community center or organization or supervising young people, becoming a leader in a youth club, leading art workshops, being a positive role model for a young person, and much more. Volunteer positions are typically unpaid.
Internship: Work experience offered by an organization for a limited period of time. Internships can be at businesses, non-profit organizations, government agencies and more.
Other resources linked to in Starr’s presentation were:
- Think College IPSE map: https://thinkcollege.net/college-search
- Ruby’s Rainbow Scholarship Fund: https://rubysrainbow.org/
- Think College information on how IPSEs can use HCBS waivers for student funding: https://thinkcollege.net/sites/default/files/files/IB_40_Use_of_Medicaid_Waivers_final.pdf
- Think College main site: www.thinkcollege.net
- Georgia-specific IPSE site: www.gaipsec.org
Our topic was Advocacy in Action. We discussed what advocacy looks like in action, and how to be an effective advocate.
Discussion questions:
- Do you have a story to share about your advocacy?
- Do you have any resources to share to help others with effective advocacy?
- Have you had any barriers to being a self advocate, or putting advocacy in action?
This month the topic of discussion was the LEND programs. We had a guest speaker (Jairo Eloy) talk about their experience with the program, and take questions about what LEND programs are, and how to get started.
From the Association of University Centers On Disabilities:
“Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs provide long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. The purpose of the LEND training program is to improve the health of infants, children, and adolescents with disabilities. They accomplish this by preparing trainees from diverse professional disciplines to assume leadership roles in their respective fields and by ensuring high levels of interdisciplinary clinical competence.
LEND programs operate within a university system, usually as part of a University Center for Excellence (UCEDD) or other larger entity, and collaborate with local university hospitals and/or health care centers. This set-up gives them the expert faculty, facilities, and other resources necessary to provide exceptional interdisciplinary training and services.”
Because this week was Direct Support Professional (DSP) Recognition Week, we talked about the DSP crisis with a focus on how to plan for the future. Our guest presenter was be Liz Mahar of The Arc of the US. Liz runs a program that helps individuals with I/DD, their families, and allies plan for the future and know what to do if/when your DSP, PCA or other support staff leave their job, pass away, or simply cannot support you anymore. We heard from Liz about strategies and ways you can prepare or get help.
Our topic of discussion was the experience of self-advocates during the most recent election.
Questions for the Discussion:
Did you vote during last week’s mid-term election?
Did you vote in person on election day or early voting? If so , what was your experience?
Did you vote by mail-in ballot? If so, what was your experience?
Did you encourage other friends or family to vote too? Did you work at the polls or in any other voting experiences?
Did you feel like you were able to exercise your right to vote and be heard? Did you have any negative experiences due to your disability?
What else can we do to help encourage more people, including those with disabilities, to vote in the future?