After my mom died, I struggled to work through my experience navigating the systems during her end of life. I’m a writer, but to make sense of this experience, I took out a Sharpie and a piece of paper to create this:
After my dad died, I took out my Sharpie again:
I found it so helpful to draw what felt so heartbreaking and complicated during a time when we really need simple, peaceful transitions.
I think sometimes we can create a visualization of an experience that describes our experience better than words can.
That’s why I’d love for you to create your own visualization representation of your experience of managing one situation during caregiving. You could doodle, paint or draw. You could create a collage (like a visualization board). Your art could reflect your experience during a hospital discharge, a difficult decision, a medical appointment, a meeting with a case manager to qualify for benefits or a caregiving day.
Bring your art to our advocacy meeting on September 12. I’ll ask for a few volunteers to tells about their art. We’ll all participate in an activity that combines our art into one powerful statement: We need help.
During our advocacy meeting on September 12, we’ll take steps to let Medicare know that help and support for family caregivers must be included in other services delivered. We have an opportunity to let Medicare know what we need right now during Medicare’s open comment period, which ends September 14.
Our Three Asks
We have three separate, deliberate asks, aimed at three different decision-makers.
- Ask CMS (Medicare): Clarify that existing “social and emotional support” billing language already covers the family caregiver as a direct recipient, not only the patient.
- Ask CMS (Medicare): Recognize home health agencies as a delivery channel for family caregiver coaching, with no conflict with existing Part A billing.
- Ask State Legislatures: Add a mandatory referral to caregiver coaching within the CARE Act’s existing hospital discharge notification requirement.
We’ll share more about each of these asks during our event and tell you how five minutes of your time can make a difference to every family caregiver.
Register to join us September 12 at 10 a.m. ET (9 a.m. CT, 7 a.m PT) for two hours. Bring your doodle, your stories and your voice.
Resources
Our advocacy only happens because you tell us about your experiences. You help us advocate for you to be reimbursed for your work and to receive more effective support.
- Non-Reimbursed Family Caregiver Savings Calculator — Define your work and learn your value.
- The Spending Impact — Share how your caregiving experience impacts your spending habits.
- Community impact calculator — Want to know what it costs your community when family caregivers don’t get the help and support they need and stop spending within their communities? Calculate the impact.
Already shared your experiences? Please encourage other family caregivers you know to calculate their value and share how their experiences impact their spending.
Upcoming Training
- Turn your personal experience into your coaching/consulting career. Learn more about the path to launching your caregiving consulting business before December 1. Our next cohort begins September 10.
