Today I had the privilege of speaking in New York City at the Annual Conference of the Interagency Council of Developmental Disabilities Agencies Inc. (IAC). IAC exists to help make a better world for people with intellectual and developmental disabilities living throughout New York State.

Throughout the day, I found myself remembering my days working at the Centers for Medicare & Medicaid Services. It has been over a decade since I interacted so extensively with professionals working at agencies serving people with intellectual/developmental disabilities. For the last decade, my focus has been on providing services to the aging population.

Provider Issues

Today taught me, however, that there are many similarities between agencies serving people with disabilities and agencies serving the aging population. For instance, here’s a list of a few of the issues we discussed today:

• Recruiting and retaining direct support professionals while there is a care workforce shortage
• Adapting to financial constraints imposed by value-based reimbursement models
• Complying with regulations that impact service delivery and administration
• Fostering an organizational culture that promotes the hallmarks of care: empathy, compassion, judgment, and reliability
• Confronting the social stigmatization of those who receive care
• Providing consistently outstanding service to clients
• Generally “doing more with less”

The truth is that every one of the above topics could have been extracted from a conference of providers serving the aging population, whether the industry is hospice, home healthcare, nursing homes, or the like.

My Favorite Moment

My favorite part of the day was the performance of the Astoria Heart & Soul Dancers and Movers. This group of adults with intellectual and developmental disabilities braved the traffic and traveled across New York City to take the stage and dance for us.

Wearing ill-fitting tutus and chasing the music’s rhythm, this distinguished group gave everything they had in a performance that was choreographed, energetic, and heartwarming. They circled the stage in a collective jive, but they also allowed the superstars to take the spotlight individually to show off their most impressive moves.

Watching them brought tears to my eyes.

When the dancers left the stage, the emcee emerged. “There’s no disability in personality,” he said. “And there’s no disability in artistic expression.”

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Today I had the privilege of delivering the keynote address at Beloved Foundation’s REACH Oncology Symposium at the University of California Riverside. Attendees were from oncology-related organizations, including healthcare providers and advocacy groups, with professional backgrounds in nursing, social work, and patient advocacy.

Regardless of organization or official role, it was apparent that each person in attendance is passionate about helping cancer patients. Most (if not all) have a personal connection to cancer that prompted them to do this work. While the Symposium didn’t include patients, I could easily see the commitment these good people have to providing relief and assistance to patients and their families.

As a bit of an experiment, I asked attendees to turn to the “neighbor” sitting next to them and describe the work role that prompted them to attend today’s meeting. After a minute of discussion amongst themselves, I invited the entire group – by show of hands – to share if the “neighbor” talked about their role in terms of others or in terms of themselves. Every single attendee spoke of what they do in terms of other people.

I wasn’t surprised by the show of hands. People who enter caring professions usually have altruistic motivations and find intrinsic satisfaction in service to others.

Often these most admirable qualities are also what lead caregivers to prioritize the needs of others over their own personal needs. An unfortunate and unintended consequence can be compassion fatigue – a state of physical, emotional, and/or spiritual depletion associated with caring for others.

In the ensuing discussion, we talked about the importance of not only caring for others but also caring for yourself. It’s not selfish to acknowledge you have needs. Caregivers are always more effective if they nurture body, mind, and spirit, recharging their personal batteries and developing the resilience to carry on for those who depend on them.

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