I recently spoke with Disability Lead Member Kira Meskin Schiff, a Community Reintegration Advocate at the Progress Center for Independent Living. After the pandemic started, she became Vice Chairperson of the Access and Functional Needs Advisory Committee, a new task force under the Illinois Emergency Management Agency (IEMA) that she helped establish in 2021. In this interview, she details how she helps lead a coalition that gets personal protective equipment (PPE) to disabled people, the Progress Center’s support and involvement, and how this work transformed into an opportunity to help draft and pass state legislation.
What is the Progress Center for Independent Living and what do you do there?
Progress Center is a non-profit organization that supports people with disabilities so they can live independently and navigate barriers to independence. I advocate alongside and on behalf of people who reside in nursing homes and long-term care facilities against their choice, helping them move out of these settings and obtain the necessary supports to transition effectively into the community.
How has the pandemic shaped you and your colleagues’ work?
When the pandemic started back in 2020, there were a number of concerns facing the disability community. We were hearing of people who had personal care assistants coming into their homes without appropriate protective equipment, like masks. There was real concern about access to PPE, and since personal assistants are front-line essential workers, they must have access to what they need to perform the essential functions of their jobs safely. This is particularly important because people with disabilities and underlying health conditions are more likely to experience severe symptoms and outcomes of COVID-19, including hospitalization and death. Also during the pandemic, there has been an increased trend of hospitals discharging people to nursing homes and long-term care facilities, which are known to be high-risk environments for COVID-19 exposure. Based on the issues we were hearing about and witnessing, my co-leader Laura VanPuymbrouck initiated the formation of our coalition PPE for People with Disabilities (PPE4PWD). She connected with people affiliated with Rush University, the University of Illinois at Chicago’s Assistive Technology Unit, and my colleagues and I from Progress Center organized advocates from our disability community.
Tell me a bit more about PPE4PWD’s organizing.
When the pandemic shut everything down, Progress Center included, we used my garage as a distribution center for PPE, and at least 95% of the PPE we received for distribution came from donations from individuals and non-profits. We had some support from state agencies but most of it was our grassroots organizing, with donations and volunteers as the main contributors to our efforts. According to the Administration for Community Living, Centers for Independent Living are pivotal mechanisms for emergency management and response for folks with disabilities, which is why we are so thankful that Progress Center has been an important partner organization for our coalition. In fact, Progress Center now serves as our distribution site, and we still provide PPE protection like KN95 and 3-ply masks, medical gloves, face shields, hand sanitizer, and medical aprons, and we will mail them to people’s homes for free.
How did this work bring you to the IEMA, and ultimately the founding of the Access and Functional Needs Advisory Committee?
As we started engaging in our grassroots advocacy work about PPE, we realized that existing emergency response efforts were not addressing the needs of the disability community. We found that the Illinois Emergency Operations Plan needed revision, since it did not adequately account for the needs of disabled people. Making such a revision became our legislative “ask”. We had data to support our concerns, as well as stories of people who use home and community-based services, highlighting some of the troubling issues that we were helping to address. After presenting our “ask” to Illinois State Senator Julie Morrison in February 2021, we received a response that she wanted to work with us. She requested that we draft language for a bill by the end of the week. To ensure that we were using a cross-disability and intersectional approach during the drafting process, we secured input from a number of organizations such as Equip for Equality, Access Living, The Arc of Illinois, Chicagoland Disabled People of Color Coalition and other key stakeholders. In May 2021, our bill SB 921 passed unanimously in both the Illinois Senate and House of Representatives.
Congratulations on this incredible achievement!
Thanks so much! Originally, we wanted to create an Office of Access and Functional Needs (OAFN) within the IEMA, since we believe that people with disabilities should be in hired positions of leadership, and an office would ensure accountability. However, through negotiations, we agreed that creating the Advisory Committee would be the first step, and we received a commitment of support for a future bill that would create the OAFN.
After the bill was passed, how did you form the committee?
PPE4PWD coalition worked with the IEMA to form the Advisory Committee by helping them recruit community members who have different experiences of disability. We also reflect a diversity of age, gender, ethnicity, and racial background. While it wasn’t mandated by our bill, we made it a point to also include people from different areas of Illinois to achieve statewide representation. I personally met with each person we reached out to and explained the scope of the role, the purpose of the bill, and made sure they were able to commit before nominating them. It was then up to the Governor’s Office to appoint the members. SB 921 also mandates that the Advisory Committee include representatives from key state agencies that are involved with providing emergency services to people with disabilities and seniors, local emergency managers, and first responders. We currently have 16 appointed voting members, as well as 13 advisory members such as PPE4PWD co-leaders Laura VanPuymbrouck, Kristen Busch, and other very knowledgeable and impressive advocates that I admire. We had an election process for Chair, Vice-Chair, and Secretary, and I am very fortunate to now serve as our Vice Chairperson. Also, I am happy to share that there are six people on the committee who are also members of Disability Lead—Jae Jin Pak, Kenneth Jennings, Randy Colón, Karen Tamley, and Sam Knight!
After my discussion with Kira, I had the opportunity to ask a follow-up question to her coalition members about the Advisory Committee.
What do you think is the big takeaway for people who learn about your work on the Advisory Committee?
Clark Craig, Disability Lead Member: “Currently, in many states the voices, needs, knowledge, skills and ideas (for solutions) of the disability community are not being incorporated into the emergency response planning process. This leads to needless suffering and possible death of members of the disability community.
People who live with disabilities every day need to be involved at the top levels of the planning process, at the state level down to the local level. There must be a diverse team of people with a wide range of types of disabilities, including (but not limited to) visual disabilities, auditory disabilities, developmental disabilities, mental illness, and physical disabilities. Members of the team must represent a wide range of racial, socio-economic and gender backgrounds.
The ultimate goal is these positions would be paid versus volunteer.”
Pam Heavens, Disability Lead Member: “Almost everyone with or without a disability is impacted before, during, and after an emergency of any kind. The person him/herself, family members, friends as well as the providers of services related to addressing emergencies are all impacted in some way.”
Laura VanPuymbrouck: “I agree with both Clark and Pam’s statements. Emergency planning, like many other areas of society, fails to consider the needs of the disability community and as a result, the outcomes will continue to be inequitable and disparate both in mortality and morbidity unless REAL solutions informed by lived experiences and knowledge of the disability community become enforceable policy/law.”
Here’s how you can get involved in their work:
· Share your personal stories of being impacted by emergencies and emergency response with Jae Jin Pak (email@example.com)
· Tell your personal and professional networks that emergency preparation and response for disability communities needs to be considered in their policies and practices
· Encourage your Centers for Independent Living to reach out to their local emergency management agencies to ensure that people with disabilities are included in their decision-making process, training, emergency drills, and tabletop exercises
· Connect to the Advisory Committee’s work by visiting IEMA’s website
· Let the Advisory Committee’s Chairperson, Todd Roach, know if you’re interested in joining when member positions become available (Todd.Roach@marmon.com)
· Join PPE for People with Disabilities Coalition (firstname.lastname@example.org)
· If you know of people with disabilities—or their personal assistants—in Chicagoland who are currently in need of PPE, please call the Progress Center’s main office at 708-209-1500