Amplifying our Shared Voices
Leadership to leverage strategic and operational best practices, shape a conceptual framework, facilitate consensus, craft guidance for messaging, and champion evidence-based research for collaboration that will inform federal and state advocacy priorities to amplify a shared voice with a seat at the decision-making table.
Education, Awareness & Advocacy
Pediatric palliative care is advancing at a tremendous pace with virtually all major children’s hospitals having palliative care teams today, some more developed than others. However, children and families spend much of their time in their own homes, trying to live life and balance survival with joy.
Community-based palliative care is struggling from a lack of leaders, legislation, and funding, which results in a dismal number of providers who are actually able to support families in their own homes. The reality is that the population we serve is quite small compared to adults and aging trends. Other healthcare crises like COVID, mental health, and opioid addiction grab priority attention and resources.
There are organizations, coalitions and task forces in areas of complex care, adult palliative and hospice care, and children’s hospitals all of whom care about the pediatric population. However, it is still difficult to be heard, and often the concerns of community-based pediatric home providers become the 11th priority of a list of 10 discussion points on larger healthcare agendas.
Supporting current and emerging organizations and providers