During the Amputee Coalition Winter Town Hall on March 15, Cass Isidro offered a glimpse into the future of the organization.
The president and CEO affirmed the Coalition’s newly imagined mission, to support, educate, and advocate for people with limb loss and limb difference; and vision, a world where our community thrives.
She said the board of directors is working on a strategic plan to go with the mission and vision, and that the plan will set the course and map growth for three to five years.
“When I was recruited for this position, I knew that my work in mobility justice and healthcare reform would be useful,” Isidro said. “And I knew I had solid experience in building organizations at the national level because the nonprofit has been my passion for 25 years.
“But what made me say yes to this position right now were the board members living with limb loss and limb difference who interviewed me, and they expressed their desire for this organization to grow and to impact more lives and for the work of the Amputee Coalition to be bigger. My day-to-drive to serve you comes from that moment.”
Isidro noted that a new prevalance study is likely to show the number of people with limb loss and limb difference in the United States has grown from more than 2.7 million to as many as 3.5 million or 4 million.
This makes the work of the Amputee Coalition more urgent and more necessary.
“Our current priorities are equitable access to care and recognition of the limb loss and limb difference community and the value of services and support to that community,” Isidro said.
She also provided answers to questions from members of the community.
Q: How can I advocate for insurance to help cover partial hand amputation prosthetics?
CI: The first step is really looking at the Advocacy Forum [in April] and looking at that training and those opportunities. The Advocacy Forum information that we’ve shared online. There are virtual events on our website, so I encourage you to get signed up, get involved, and learn more about what your part is.
Q: Would you please explain a little bit more about the workshops and the Advocacy Forum?
CI: The workshops are intended to meet people where they are, so we have things like Advocacy 101, deeper dives, meeting with your representative, how to find your voice. But there are four sessions in particular. I would encourage you to register and, if the time doesn’t work for you, you can watch it at your convenience to get the most out of it as well.
For local advocacy, also something to think about is the Ambassadors and Community Champions program.
Q: I want to become a motivational speaker and want to know where to get started.
CI: We would love to have you join us and really consider joining our Storytellers group, which is also part of the Ambassadors and Community Champions program. We’re always looking to give you the opportunity to share stories. It’s a great space to get started and really find your voice and your authentic story.
Q: We’d love to have clarification around the Regional Ambassadors program and the role that you see that playing in the future of the Amputee Coalition.
CI: So my understanding is we have more coming soon, but the Regional Ambassadors program is live. It’s running and we are continuing to move it forward.
Q: Are there any specific efforts to enhance Medicare coverage for limb loss regarding coverage on prosthetics? Where is the Coalition regarding the introduction/reintroduction of consumer-focused legislation at the federal level?
CI: I can tell you, being so close to DC, that we’re always looking at federal opportunities. Right now, what we’re seeing is the states are really the space where things are moving, and they are leading. There’s not quite the appetite for federal legislation at this time, but we’re keeping an eye on it. Currently, we’re working in 12 different states to move legislation, and that’s some of the details that we’ll be sharing with you throughout the year.
Q: I’m an amputee clinician in Washington, DC, and work at the DC VA. I would love to support and volunteer. How can I get involved with the organization here in DC and the support group in DC also?
CI: For those interested in volunteering in DC or anywhere, the best thing to do is to go to our website, where you can learn how you can provide that support.
Q: It would be great to have a program that matches people with spare shoes. There are Facebook groups, but they are not very effective and there’s a lot of misinformation out there.
CI: This is really where AC Connect can serve as that space for connections. We’ve had similar things posted on AC Connect already. We’ve had people talking about National Conference and potentially sharing rooms. We’ve had folks giving advice on swimming prosthetics and how to get connected. So I would encourage you, if you don’t have an account already, to make your profile. Check it out, even if you want to lurk for a little bit and see what resources are there. Size-10 shoes, you may start a great conversation and find out there’s something there to make the connection.
Q: Are there any in-person support groups in South Carolina?
CI: Yes, we have plenty of support groups in South Carolina. We recognize that South Carolina is a big state, and maybe we can make a really close connection for you.
Q: The peer-to-peer mentoring program for new amputees to be matched with experienced amputees, it could be like a Big Brothers/Big Sisters program. It would need to be vetted, but that would be interesting.
CI: Right now, we have a pretty active and extensive volunteer and mentorship program. While we’re always looking for new places and ideas, you might want to look to AC Connect or to the Certified Peer Visitors program, and that’s where we might consider developing something within that. So while I can’t speak directly to whether we build this, you might just want to check out what we have now and see if there are enhancements or ideas that may come from that. But love the new ideas. Those need to keep coming.
Q: What is the new administration going to do for the amputee Spanish-speaking community? We need inMotion Magazine in Spanish and some updates on Facebook in Spanish and other communications.
CI: One of the most important things in answering this question is to acknowledge that we haven’t been as active in this space as we should as an organization. But I can tell you moving forward and what the staff even briefed me about before I got here, this is not just me, is that accessibility and usability really are top priorities for us, and we recognize that. The videos that we recently developed with Association TV have Spanish captioning. In addition, the National Limb Loss Resource Center provides resources in Spanish. We’ve also focused resources for multiple languages on our website. So, to that end, if you go to the website, there’s a newly added accessibility feature which translates to Spanish and other languages as well.
So this is an ongoing effort, and I would just rely on the community to let us know what else you want to see. Let us know what’s relevant because this is a top, top priority for us.
Q: I’m a below-knee amputee of about three years, and I am interested in learning to swim. I have not found a lot of information on the subject. Can you address this?
CI: We intentionally put this question at the end because, as we’ve said a few times, we really want to emphasize that we’re listening. You’ve let us know that you want opportunities to connect with staff but mostly each other, so the AC Connect platform exists and there will be opportunities, there already have been, to chat about swimming and sharing and so forth. Aside from that, we also have patient navigators on staff that you can reach out to to talk about specific issues and connections that you’re looking for, as well as the National Conference. We have a swimming session there. So I hope you’ve marked your calendars for the conference. I hope you’re planning to join AC Connect and look for the opportunities to connect with each other.