Advocating for People with Disabilities

April 3, 2018

I recently spoke with Sarah Ailey, Professor in the Department of Community, Systems and Mental Health Nursing at RUSH Medical Center (pictured center in photo), about an exciting collaboration with Still Point that began last year. Sarah helped to organize the PATH-PWD (Partnering to Transform Healthcare with People with Disabilities) Conference in March of 2017 after receiving funds from the Agency Healthcare Research and Quality and the Special Hope Foundation (now the Working for Inclusive and Transformative Healthcare [WITH] Foundation). The need for the conference stemmed from a growing awareness of inequities for people with disabilities in receiving appropriate healthcare services in the United States. Familiar with Still Point’s Imagination Workshop programming for adults with intellectual disabilities, Sarah approached the organization to participate in the conference by working with several community members to share, develop, and present their real-life experiences in the healthcare system. The participants were chosen to work as public advocates on behalf of the community, and the presentation of their personal stories was quite impactful.

After the conference, representatives including Sarah began to brainstorm about expanding their advocacy work by creating a video. Again, RUSH approached Still Point to collaborate. Sarah shared that the two main goals of the video project are: first, to create a sense of outrage over the treatment of people with disabilities at healthcare facilities; and second, to empower viewers with concrete actions that they can take to improve the situation in their own communities.

An example of an all-too-common form of mistreatment of people with disabilities is a person showing up at an E.R. with chest pain and not being taken seriously even when experiencing cardiac arrest. The perception of some healthcare providers is that a person with an intellectual disability “wouldn’t know” if or when they were experiencing such serious, life-threatening symptoms. Obviously, these perceptions are discriminatory and dangerous.

In addition to changing the attitudes and practices of healthcare providers, public policy changes are being suggested and promoted through the video. One such example is the requiring of a portable, concise health history card that can be carried with a person so that their important medical information can be quickly read and noted by providers when the person shows up at a new facility as a patient. Right now, caretakers might show up with a huge binder recording all health services received by an individual, and which obviously cannot be ingested by the provider, especially in an emergency situation.

According to Sarah, there are a variety of ways in which the video will be used. One target audience includes people with disabilities, their families and advocates. Another will be hospital administrators, insurance companies, and other policy makers who have a great capacity to influence how people with disabilities are treated within the system. Conferences, board meetings and other gatherings will be targeted as venues for screening the video. RUSH is investigating how to distribute the video, including possibilities for online access.

Columbia film student Adam Villani has been doing an excellent job as videographer for the project, and interviews have been recorded both locally and at Georgetown University for this ambitious project. We at Still Point are grateful for Sarah’s dedication to the cause of advocating for the rights of patients with disabilities, and are tremendously proud to be a collaborator in this project. Discrimination against people with disabilities in the U.S. healthcare system cannot be tolerated by a just society, and Sarah asserts that we can all play a role in advocating for change. Still Point will provide information on accessing this video as soon as it is available. (Photos were taken at a recent video shoot in Skokie, IL.)

by Anita Dacanay