Looking back on the year's work.
Where it all started over 5 years ago: A four-letter word that is 8 letters long.
When I first met Lourdes, we talked about our sons who had just died, a few months apart. What they had both experienced in a broken medical system, how we had
fought like crazy for them to have proper care, how our advocacy for our sons was met with disdain, frustration, and more roadblocks. Lourdes said advocacy in the medical world really is just another four-letter word. It's often met with the same response.
Lourdes is a family practice physician. If ever there was a perfect advocate, it would be Lourdes. I realized that our credentials, education, and experience didn't mean we'd be met with ease of advocacy. Trying to change an embedded system is not easy. Countless parents and caregivers advocate strongly and compassionately on a daily basis for their medically complex children, yet the system rarely changes.
“One of the most crucial kinds of intervention is in advocacy. We can think about charities in the context of delivering services, and indeed that is part of their job, but advocacy is also getting governments to step up to the plate. They can also give more voice to those who don’t have one.” — Nicholas Kristof
Hero's Path Palliative Care has delivered incredible services to our community in 2024.
Outdoor Nature-based Educational Program:
Hosted 12 after-school programs at ASLA
Hosted 6 summer programs across the greater Albuquerque/East Mountain area
Every educational program supported children with medical complexity and their siblings plus community peers with medical support, music therapy, and training on coping with medical trauma.
Respite Events:
Hosted 3 Community Respite events
Respite events were often the only time caregivers were able to take a break from the high-stress demands of 24/7 caregiving.
Respite events often had waitlists (we need to expand the program, but lack of funding has limited its growth)
Respite events included support for medical needs, siblings, and emotional well-being.
Children had a lot of fun learning and engaging in uplifting activities, making memories.
Psychosocial Support:
Dr. Korie Leigh worked with several families this year. Many families received her services weekly.
Services included coaching and counseling on coping with high stress, managing anticipatory grief, bereavement services, and healing medical trauma.
Hands-on approach to healing includes art, music, play, and writing to help process and navigate stressors. An example includes a teen writing and recording songs about her medical journey.
Behind the scenes work: Advocacy
Most nonprofits were founded by people who encountered a systemic problem and decided that they must do something to improve it for others.
“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” — Maya Angelou
Change happens when enough people decide to work together toward a goal. Change happens at the individual, local, state, federal, and global levels when advocates show up and don't give up. Advocacy is a long game, hours of hard work turning into months, and years, often with very little to show for it. The most powerful changes have happened over years and decades.
“I am no longer accepting the things I cannot change. I am changing the things I cannot accept.” — Angela Davis
Hero's Path Palliative Care Advocacy work:
We were one of the few stakeholders representing pediatrics in a statewide effort to create a Medicaid benefit for Palliative Care across the lifespan in New Mexico. New Mexico Medicaid currently does NOT reimburse for palliative care services.
Jen Bartz sits on the board for The National Coalition for Hospice and Palliative Care Pediatric Division that works to improve children's access to Palliative Care on the National level.
Partnered with Ciudad Soil and Conservation District, The City of Albuquerque Open Spaces Division, and Nature Matters Academy to build Albuquerque's first inclusive sensory trail (the trail will open in early 2025).
Represented family voices at various community events to improve access to community spaces by advocating for better wheelchair accessibility and adult changing tables in public restrooms.
Working on achieving funding for a resource sharing hub housed by Hero's Path that would provide all-terrain wheelchairs across the state to increase accessibility in more locations.
Pushing for paid caregiver services within the Medically Fragile Waiver. "For decades, families of children with medical complexity (CMC) have been the backbone of the disability care system—providing around 1.5 billion hours of unpaid care per year to keep kids out of costly institutional settings. Despite their unwavering dedication, these caregivers have often faced financial instability, burnout, and emotional strain. Now, the AAP is recognizing this extraordinary effort and calling for systemic change." Read more on this important topic.
What's your favorite Gift of the Season?
The Educational Program! It is a consistent needed service
Respite! Families should have more ability to recharge
Psychosocial! Emotional well-being is vital
Advocacy! The best way to get lasting change
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