Karl and I traveled to Buffalo, NY this week (April 30 – May 2) to attend the 2019 National Respite Conference. Our flight schedule connected us through Philadelphia, PA where we met Elissa Lewin, foundress and executive director of “Nancy’s House,” based in the Philadelphia area – a respite retreat program where caregivers come for 1 to 3 day retreats to rest, renew, connect, and learn skills. She became a new friend over the weekend. We have similar goals to improve the health outcomes of caregivers!
The New York hospitality team’s welcome reception Tuesday evening for over 300 respite professionals included famous Buffalo Wings, New York wine tasting – “Uncork New York!” and the band, “Flame” – which showcased people with differing abilities putting on a great musical show.
On Wednesday morning, we visited “Public Espresso and Coffee” – a short walk from the hotel. We enjoyed a fresh vanilla cruller and raised doughnut with orange glaze and pistachios with coffee. A Buffalo police officer also visited while we were there.
The Wednesday morning conference program began with a “Caregiver Simulation” where conference-goers were invited to:
A. Act as a care-receiver
B. Act as a care-giver
C. Act as a community provider (YMCA, VA Benefit Center, Bank, Grocery, etc.)
D. Observe
I acted as a care-receiver, “Kristin,” age 9, a wheelchair-user, with cerebral palsy. Karl acted as my care-giver, “Grant,” Kristin’s dad, a 50-year-old veteran with PTSD, recently widowed. Two other duos played out this scenario. Many other scenarios were played out including caregivers with people with other disabilities, across 3 communities or large groups. At the end of the exercise, participants shared their thoughts. A common sharing which Karl echoed was the frustration many caregivers feel about the inability to access comprehensive information and referra in a central place.
The Wednesday luncheon keynote was offered by Andy Goodman about the power of storytelling for cause organizations.
Wednesday breakouts I attended included a session on crossing synergy borders with family, friends, non-profits, government institutions, and corporations, to impact better support for care-givers. Sheila Warnock, author of “Share the Care”, and Gregory L. Johnson, Senior Advisor for Family Caregiver Office of the CEO, EmblemHealth NYC.
