Need for Respite
The Most Overlooked Lifeline in Children's Healthcare
For families raising a child with a life-limiting condition, the daily reality can be exhausting — physically, emotionally, and spiritually. Most parents provide complex care 24/7 with little support. They are nurses, therapists, advocates, and constant protectors — often without sleep, rest, or time to care for themselves or their other children.
Overnight respite is not a luxury — it is a necessity. Yet this essential form of support is almost entirely absent from the healthcare landscape.
Despite being named a top unmet need by families in study after study, pediatric overnight respite care remains largely inaccessible in most U.S. communities. Most existing pediatric palliative care is hospital-based, while community-based options are rare, inconsistent, or fragmented. Families are often left with only two options: bring their child to an Emergency Room in crisis, or go without help altogether.
A dedicated Children’s Respite Home changes that equation. These homes offer:
-
Planned breaks that are predictable and reliable
-
Emergency respite when a family is in crisis
-
An alternative to costly hospital admissions
-
A reprieve that strengthens the family as a whole
More than 80% of the services delivered at existing Homes are planned overnight respite — not end-of-life care. And yet, most U.S. states lack even a single pediatric respite home. To truly support families navigating the unimaginable, we must build this missing piece of the care continuum — and we must do it now.