LIFE CIL – Fierce advocates

INCIL: How did you get started in independent living advocacy?

Benecke: I came on board at LIFE CIL as executive director in April, 2018. Before that, I had many other roles here –  secretary, Personal Assistant Coordinator, working in Community Reintegration, Disability Rights, pretty much every job in the office. I think that’s helped me grow into my position and really have a working knowledge of what it’s like to be an advocate in various programs.

INCIL: How would you describe the LIFE CIL team?

Benecke: We all work because we’re passionate about what we do. We all have the desire to make our communities inclusive, [so that] people with all kinds of disabilities can live in their own homes. We are a strong, dedicated team of fierce, hardworking advocates who work together to fulfill our mission. We barely have any turnover here, and our resilience helps us accomplish our goals of serving as many people as possible. Right now that’s more than 3,000 people a year.

INCIL: You are the first in this series of CIL profiles to describe a staff as ‘fierce.’

Benecke: For such a small team – 10, including me – we do so much and do it so well together. Our team is what makes us different. Each person is resourceful and hardworking. For example, in just one year during the COVID pandemic quarantine, we were able to move eight people out of nursing homes into their own homes. It was a grand slam, a huge success for everyone involved!

INCIL: How were you able to do that?!

Benecke: Andrea Kindseth, our community reintegration advocate, came up with such creative ways to meet with consumers who were afraid of being trapped during lockdown and wanted to move out. She would leave an iPad at the nursing home so a resident could meet with her via Zoom. She also used iPads and Zoom to take nursing home residents along on virtual tours of possible rental apartments; then, later, she would take them shopping virtually for furnishings. By the time the arrangements were finalized for the moves, the apartments were ready. She is very resourceful and wasn’t about to let a global pandemic slow her down.

INCIL: I love that story! What would it take for you to do even more fierce, resourceful problem solving and advocacy for consumers in your area?

Benecke: Well, you didn’t think I would do this interview without talking about the budget, did you?

I think CILs are often overlooked during the State budgeting process. I wish there was a way for legislators and those who work with the state budget process to see the thousands of people we help, and the difference we make in small and large ways. We do not have adequate funding to serve all the people with disabilities who need services and would benefit from the difference we can make. It’s frustrating not to even have enough dollars to keep up with the rising costs associated with inflation. Our costs are exploding.

INCIL: What is one area where additional funding would be most helpful?

Benecke: Our travel budget, for one thing. Our budget for travel has actually decreased in the past five years, even without factoring in inflation. So, we are not able to provide as many consumer services, especially to people without internet and a computer, and there are some services that must be done in person – not over the phone.

INCIL: Such as?

Benecke: One of the most important services we provide is teaching independent living skills, such as how to cook with a disability, how to do laundry, and more. A consumer has to be able to do these things if he or she wants to move out of a nursing home, or out of mom and dad’s house. Teaching any independent living skill is very hard to do over the phone.

Another area affected by reduced travel is peer mentoring. Peer mentoring is built on relationships. Building trust and understanding in order to encourage sharing is much harder to do over the phone.

And other services are not just difficult, they’re impossible. To help our older individuals who are blind, we must be in person to help them learn to use assistive technology. If they can’t get to our offices, our vision advocate has to get to them to provide needed devices and training so they can stay out of assisted living and nursing home settings if that’s what they want.

INCIL: Your several roles at LIFE CIL have given you so much insight into the lives of your consumers and their passion to live independently.

Benecke: It’s also my personal experience. I do what I do because, as a person living with multiple disabilities myself, I know firsthand what it’s like to be excluded from something, whether it’s employment or something as simple as a family dinner when everyone is laughing at something; I’ll ask ‘What’s everyone laughing about?’, and they say, ‘Oh nothing.’

 I don’t feel anyone should be excluded. My goal at LIFE CIL is to work myself out of a job. I would love for all CILs to cease to exist because they’re no longer needed, because everyone is equal, integrated, and living as independently as they wish.