My name is Jae Kennedy and I run a grant program called the Collaborative on Health Reform and Independent Living (CHRIL). We’re a group of scientists looking at how recent changes in health policy affect the well-being of people with disabilities. You can visit our website for more information about who we are and what we do: http://chril.org
You can see more on the Disability Stories Projecthere: https://www.chril.org/disability-stories-project/
We do good work and try to get our research findings to disability advocates and policymakers But our tables and graphs just aren’t enough. That’s why we are starting a new project called “Disability Stories about Health Policy.” The Disabilities Stories Project will help support and contextualize our research findings with personal stories from people with disabilities. This application has been reviewed and approved by the Washington State University Institutional Review Board.
We really want to hear your story. If you are interested in participating, please notify us via email at email@example.com or by phone at (509) 368-6979. We will then email you a copy of our consent form, you can either email us the consent form back or give us verbal consent on the voicemail number provided. Once you give consent, you will be asked to email us at firstname.lastname@example.org and tell us in up to 500 words about your experience as a person with a disability navigating through the US health care system or call and record your story in five minutes or less at (509) 368-6979. We will follow up within 10 business days. Your involvement in this project is completely voluntary. If you wish to drop out of the project at any point, you can do so without penalty. Those who are selected to participate as “health policy advisors” will be given $25 and reimbursed for up to $300 to include transportation expenses and for disability accommodations such as ASL interpreters, assistive listening device, and CART. If additional disability accommodations are required such as an assistant, please notify us in advance.
What we are looking for. We are particularly interested in hearing how the need for health insurance affects your choices about participating in disability programs or working. But these aren’t the only health policy issues out there, and if you have another story you want to tell, please do so. For the purpose of this project, we are asking for individuals between the ages of 18-64.
Benefits to you. We will review all stories and select those that best illustrate key health policy issues affecting people with disabilities. Up to 40 participants will be designated as “health policy advisors” and receive a $25 cash card. We will then contact these advisors to arrange audio or video interviews.
When and where will the interviews take place? Interviews will be held at the Association of Programs for Rural Independent Living (APRIL) annual meeting in Denver Colorado in October 2018 and at the WSU Spokane and Pullman campuses. We will edit and share these stories (with appropriate attribution) at research conferences, at meetings with policymakers, and on our website. There is also an option for you to provide your story/experience in a confidential manner. If you do not want your audio or video included on our website or in CHRIL research there will be an option for you to be given a confidential code and your information will not be linked to your name, location, or occupation.
Thank you for your help, we look forward to hearing from you!