2019 TASH Conference

This interactive presentation will provide techniques and best practices currently being used successfully to include people with disabilities and families and enhance diversity and inclusion in policy making and system design efforts currently underway in various states. Participants will learn how to utilize mentors, pre-meetings, meeting space, seating arrangements, reimbursements, and easy read documents to support people with disabilities and families to serve effectively on boards and policy-making bodies as well as identify alternative methods for gaining a more diverse array of input into decision-making. The presentation is based on a national study of Developmental Disability Councils, Protection and Advocacy agencies, University Centers for Excellence in Developmental Disabilities and State Departments of Developmental Disabilities. Every participant will have an opportunity to complete and leave the presentation with a force field analysis of their current situation to identify where to most effectively place their future participant engagement efforts.

Project ACTION! is a successful well-established self-advocacy group in Washington, DC. As its leaders, we realized that we need many more self-advocacy leaders if we were going to address all of the issues we hear about at monthly meetings AND if we are going to create needed changes. We want to be at the tables where decisions are made. There are so many Boards, committees and workgroups at which we want to be represented. Therefore, Project ACTION! has done a number of things that have been successful. This interactive session will provide strategies to train new leaders and develop a pipeline of secondary leaders. Project ACTION! leaders have designed and provided our own leadership training, provide training on serving on board and committees, supported people to testify at public hearings, recruited members who have completed DC Advocacy Partners, developed a 6-month leadership training program and recruited current and potential members interested in taking charge of their lives and making changes that are important to them. We also typically lead and serve in pairs so that we can support each other and mentor new leaders. Some changes we address relate to programs, services and systems. Other changes focused on relationships, attitudes of others, limited opportunities and not being treated with respect. Examples of leadership training topics are Finding Your Voice; Identifying Issues that are Important to You; and Taking Charge of Your Life; Running and Participating in Meetings; Serving on Boards; Talking So That People Will Listen, and more. Our trainings involve fun interactive role-playing, so that people can practice and learn in a safe non-threatening places. We also pair new self-advocates with more experienced self-advocacy leaders, who can help them practice new skills and build their confidence. This session will help self-advocates and their allies and supporters to learn new approaches to leadership development, and will provide time for participants to share additional strategies.

Project ACTION! is a regional self-advocacy coalition of adults with developmental disabilities that has been active for over 30 years in Washington, DC, Maryland and Virginia. Since their inception, Project ACTION! has focused on "Building Diverse and Inclusive Communities" for the people they advocate with to have their voices heard and interests represented. The Project ACTION! presenters will share how they have successfully advocated for change in the government system that provides their disability supports over the years. The presenters will share how they choose to work with non-disability coalitions and other groups to ensure they have a seat at the table. They will talk about the importance and impact of cross-collaboration so even more people will know about the needs of people with disabilities.

How many times have you asked yourself, "what am I going to be when I grow up?", or "how will I ever get this done?", maybe even "I don't even know where to start...". These are all common questions and thoughts that are frequently on the minds of people with and without disabilities. Parents, educators, and employers take for granted the skills needed to have a goal, create a strategy, monitor progress, and then adjust as needed. Unfortunately, these skills are not being taught in school and students are feeling the effects. Self-determination skills are a valuable set of tools that all students should be taught and are skills that should be reinforced throughout a person's lifespan. When people are taught the skills needed to advocate for themselves poor choices are minimized, graduation rates go up, drop out rates go down, and long term employment is achieved. Through this presentation, attendees will learn how to incorporate self-determination strategies from Pre-K through adulthood. Attendees will also learn about the resources and activities available to them to help foster independence and self-advocacy skills needed to function in today's society.

People with little or no reliable speech receive (if fortunate) communication support during school ... but what happens after that, when real life begins? This panel of self-advocates and communication partners will present how this type of support happens in college, at work, on dates, during medical appointments, while traveling, and more. Self-advocates will bring pre-composed introductions and questions for the audience, and the entire panel will take live questions and facilitate discussion. Adult topics are encouraged, including relationships, sex, family challenges, etc.

The peer supporter plays a role in informing the service delivery system and making recommendations for changes to the system. Through the formal complaint system, DC DDS also tracks and trends data to inform systems change. Annually, the peer supporters write a report highlighting their work and recommendations for systems change that is needed to help improve the lives of people supported by DDS.

We all look to others for various supports in each area of our life. With so much of our time spent at work, the relationships we have with our colleagues are significant. Working in tandem, collaborating, and traveling together often leads to the shifting of these relationships — paving the way for reliability, trust, and camaraderie. This is especially important in work relationships between people with disabilities and their nondisabled peers. EVERYONE benefits where there are mutual affection and supports! The presenters will share their stories of coming together in the workplace, and how those relationships led to ones of flourishing and friendship.

Disabled self-advocates and nondisabled family members, professionals, researchers, and policymakers often have the same ultimate goals in mind - meaningful opportunity, access, community integration, empowerment - but vastly different ideas of what those things mean or how to get there. Even experienced and committed advocates and attorneys often do not understand how they can best collaborate with and learn from people with disabilities ourselves in strategizing for social justice and civil and human rights, especially those of us with communication-related disabilities. In this session, we will examine strategies that disabled people straddling the worlds of policy, law, research, academia, and services have used successfully to bring self-advocacy and disability rights and disability justice frameworks into spaces where we are often excluded or only tokenized. We will cover approaches to grantwriting, service design and delivery, nonhierarchical coalition-building, and resource redistribution, among others.

A 6th grader on the autism spectrum learns to advocate for his needs by determining how to receive instruction in the general education classroom. Assistive technology was used in order for him to choose prior to each class whether to receive instruction in class with his peers or virtually with his same peers through Google Meet and Brigit. Behaviors (aggression, screaming, and biting) immediately dropped and uninterrupted instruction in general education increased.

Join us to be part of our Self Advocacy Jeopardy trivia game. Participants will work together in teams to answer trivia questions about disability issues and other fun categories. Teams will be chosen on a first-come first serve basis so get there early. Prizes will be given to the winning team so good luck to all!

Student involvement in Individualized Education Program (IEP) meetings are recognized as part of the Individuals with Disabilities Education Act (IDEA), however, student involvement in educational planning often does not occur until the age of transition, if it happens at all. Although there is research documenting the importance of student participation in IEP meetings, there is a gap in research focused on how families are impacted. There are no studies specific to students who are deafblind. The purpose of this presentation is to explore elementary student involvement in educational planning as an auto-ethnographic case study, specifically focused on how early student involvement in educational planning can improve collaboration within the IEP team. The presenter is a parent of two children who are deafblind. She will discuss her personal experiences of involving her children in their IEP meetings at a young age and will discuss findings from the case study of her elementary son's IEP team. Case study data collection involved interviews, observations, and document review. IEP team members (including the student and other family members) were interviewed about their IEP meeting experiences. The study involved observations of the 10-year-old student's IEP meeting and review of IEP related documents. This study is unique because the researcher, as a parent was also a participant in the case study. Presentation of the case study results will be presented from the family perspective.

Too often people like me, autistic and non-verbal, are excluded from fun experiences. Whether it is in school, at home, or on the job, with proper supports, we can and should be given the opportunity to participate in recreational and leisure activities. With still photography and videos, I will demonstrate how I have been able to enjoy life. I am no longer a student, but I will talk about the fun things I did while in college, for example, going to museums, the race track and Las Vegas. I will also show pictures from cruises I went on and a trip to Cuba. Because I live in my own house, I am able to plan leisure activities in the community. I always like to land on my feet, so I am never going to swim for fun. I also have arthritis and poor balance so sports are out of the question; however, I can enjoy short hikes, going to the beach, movies, the theater, clubs, Dodger games and Disneyland. My microenterprise gives me the opportunity to enjoy spending time with Becky, my micro-enterprise consultant, and Michelle, my job coach. Relationships like that are extremely awesome. I will talk about what supports are needed to make all of these experiences happen.

I will provide some background about myself and how photography helped my son (who has a disability and is non-verbal) communicate. I am an educator and a photographer and also a disability advocate. I am on the board of The Arc Tennessee, a graduate of the Partners in Policymaking Leadership Institute (a program of the TN Council on Developmental Disabilities), and a founding member of WCS Link (a special needs parent group that works closely with Williamson County School Student Support Services administration to provide support to families in the district). I combine my teaching, photography, and advocacy skills to teach photography to Transition II students in Williamson County School as a means of self-expression, empowerment, and advocacy for these individuals. I will present research-based evidence to answer the question: Why photography for students with disabilities? (both viewing and making photographs).... photography is a flexible and accessible medium, it is a good activity for our bodies and brains (stimulating), it helps individuals develop new skills, it is a powerful vehicle for communication, it can help build relationships (both peer and teacher/student), it promotes empowerment through creating something new, and it is an effective too for advocacy and promotes social change. I will provide examples for each of these reasons. I will discuss what the photovoice methodology is and share about the photography projects I have developed and led with Transition II students in Williamson County Schools this past year. I will walk the audience through these semester-long projects, from start to finish. The culminating activity of each project is for students to exhibit their photographs in a gallery space so that family, friends, and the community can view and celebrate their work. I will also share a 5 minute video that takes viewers through a project... photographs set to music (which I create at the end of each project and show at the exhibit reception event). Q&A time and also allow participants to view student photos (and read accompanying captions). I will also bring a camera that students use and adaptive equipment that some students use as well.

Diversity and inclusion are hot-button issues in American society today, where marginalized people - people of color, women, and people with disabilities are demanding equity, representation, and respect in their communities, in the media, and across the world. This is no different in the boardroom. Though many people benefiting from the services and programming of nonprofit organizations are disenfranchised people, most nonprofit board members are unaffected by the issues faced by those served by the organizations they oversee. Nonprofit boards of directors have a long way to go with ensuring that the people their organizations support have representation and an equal voice at the table. Some boards have no people with disabilities serving on them, whilst others have a single person with a disability who may or may not be a fully engaged and contributing board member. When people with disabilities are not supported to authentically participating on the boards they are sitting on, they are used to give the external illusion of equity. People with disabilities — like anyone else — have the inherent right to autonomy, informed decision-making, and contributing to their communities. In soliciting and grooming board members with disabilities, nonprofit organizations and their missions become transparent, authentic, and compelling to beneficiaries and allies.