June Volunteer Spotlight: Toni Kay Mangskau

Toni Kay’s advocacy work was born out of her own role as a caregiver to many family members. She has worked on a number of local advocacy efforts and continues to work closely with her community to advance NPAF’s initiatives related to care planning and caregiving. Toni Kay has been an NPAF volunteer since 2013. Read on to learn more about Toni Kay.

Describe the advocacy work that you’re doing in your community and what motivated you to start.

My advocacy efforts started around 2003 when my son was diagnosed with Crohn’s Disease. I’d send him to school and the school nurse would send him home. There were days my son couldn’t even drink water without getting sick. Although he was a very gifted student, his dream of becoming an Air Force pilot and playing high school baseball ended because of his diagnosis. He had to be home schooled for almost 3 years in order to graduate high school. Also, during this time, my daughter was struggling with chemical dependency and mental health issues. With both of my children, I struggled to get the support they needed from the school and their doctors. To make matters even more frustrating, my insurance wasn’t helping cover medical treatment costs. I was at a loss. I felt I needed to pick which child I could help as I was a single mom, working part-time, no child support and no cash reserve.

It was at this time, a young adult knocked on my front door. He was running for state office and wanted to see what issues were important to me. I had always loved politics and thought this was my opportunity to make the necessary changes in our country, so no other parent would have to struggle like I did. It was time to speak up. I worked on four of the candidate’s successful campaigns, helped as a debate coach and wrote some media materials. I had found my voice and no one would keep me quiet now. If I saw someone needed help or an issue that needed to be addressed, I became the advocate for the cause. It’s been 18 years now since I found my voice. I have advocated on behalf of healthcare and caregiving issues, community corrections and racial injustice. My daughter now has 6 years sobriety and is enrolled in college to become a social worker, just like her mom! I’m so proud of her. My son still struggles with his disease at times, but knows how to advocate on his own behalf. I have since had my own medical struggles and have been caregiver for my parents and disabled brother. It seems I have found my calling in life. I’m so glad I made it through some very tough times and my kids were learning along the way. My goal is to help others find their voice. Advocacy work has been the mechanism to accomplish so much. We need to motivate others. I hope sharing my story will provide encouragement to others.

What advice would you give to other volunteers who would like to do something similar?

Share your story. Speak up. Don’t stop believing change is possible. Network with your friends and neighbors. Someone in your circle may have similar struggles. You may never know until we start sharing our stories and talking about what unfortunately seems to be “taboo” issues (money, bills, health concerns, stress, etc.).

Since you’ve been a volunteer with NPAF, what are some of the things you are most proud of?

Being referred to as an “advocate”, the opportunity to share my story to influence policy change as well as the opportunity to mentor others.

And because we are in the middle of Caregivers Count, we also want to acknowledge your important role as a caregiver to your family members.  Will you also share briefly how caregiving has influenced you as an advocate?

I’ve learned resources for caregivers are very fragmented and it seems you need to “stumble upon them”. Society doesn’t recognize the role of the caregiver. We tend to focus more on the patient. I wouldn’t have wished the struggles I’ve experienced for any other person. Let’s learn from people’s experiences and create positive changes for future caregivers. I have been talking with many community organizations and city leaders about caregiving. I’m very fortunate to be a member of a church that is considered a “ mover and a shaker”. There are elders ready to guide fellow members on steps to take to bring hope and healing for caregivers in our community and beyond. I envision a future caregiver resource center based at my church: The Bridges Program, a name I thought of recently.  Years back, I thought I was drowning in my struggle as a caregiver. I didn’t know if there was any bridge to carry me across the flood waters. I know now there are people who will lend their support and provide safe passage for future caregivers. I am so grateful.

Toni Kay Mangskau is a NPAF volunteer and resident of Minnesota.