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A small, cottage-style center in San Leandro is offering families something increasingly scarce: supervised, short-term stays where medically complex children can be cared for outside a hospital at no charge. The model eases relentless caregiving and, in some cases, becomes the place where families spend a child’s final days — a reality that is pushing advocates and policymakers to rethink pediatric palliative care nationwide.
Arrival day: relief and routine
When Daniel Lockwood arrived in early June, his parents guided him from the car into a homey room painted with woodland scenes. The 14-year-old, who uses a wheelchair and requires round-the-clock care, walked in with the kind of excitement that can accompany a rare, worry-free night away from home.
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The house offers more than a temporary break. Families unload medication lists and feeding schedules into a system staffed by nurses trained to manage complex needs. Bedrooms are equipped for medical support — including oxygen connections — but the common areas aim to look and feel like a family space, with gardens, crafts and music programs on the calendar.
Two very different reasons families come
Visitors use the facility for two main purposes: short-term rest for caregivers — known as respite care — and pediatric palliative or end-of-life care. In both cases, parents leave confident their child is under professional supervision; in the latter, families often remain at the bedside for the child’s final days and may bring siblings to spend time together.
CEO Shekinah Eliassen, who returned to lead the organization years after her newborn son died there, says the center never bills families. Her experience — and those of many other parents — is a core reason the model exists.
What the program provides
| Who | Why | Typical supports |
|---|---|---|
| Children with life-limiting or complex chronic conditions | Respite from continuous home caregiving | Skilled nursing, activities, meals, therapy spaces |
| Children nearing end of life | Comfort-centered care and family presence | 24/7 clinical care, bereavement counseling, private rooms |
| Siblings and extended family | Shared time and memory-making | Family lodging, activities, emotional support |
Staff describe the environment as intentionally non-clinical: volunteers run music and art sessions, and caregivers often trade scenes of joy and grief in the same day. Clinically, staffing ratios can be intensive — reported as high as four nurses for every patient in some situations — reflecting the medical needs these children present.
- Respite stays allow caregivers to rest, renew and attend to other family members without abandoning medical oversight.
- Palliative stays provide symptom control, family-centered support and space for end-of-life rituals.
- No direct billing keeps care accessible but creates long-term funding challenges for operators.
Origins and expansion
The concept began in the United Kingdom and reached the United States in the early 2000s when clinicians and advocates adapted the model to local needs. The first U.S. site opened in 2004 after clinicians recognized the harm of hospital-centered deaths and burnout among families who rarely left their child’s side.
Inspired by that model, advocates such as Jonathan Cottor — whose son received similar care in the U.K. — helped found a comparable home in Arizona and later launched national initiatives to scale the idea. Recent milestones include the first state-level pediatric palliative care center license issued in Iowa, and several projects now in various stages of fundraising or legislative review.
Why this matters now
The population of children with complex medical needs is growing, and hospitals alone cannot absorb the non-medical, emotional and logistical support families require. Experts say that without community-based options, many families either continue living in near-constant caregiving isolation or bring children back to hospital wards for end-of-life care.
Advocates and medical leaders are pushing for three linked changes: better reimbursement mechanisms, clearer licensing pathways for residential pediatric palliative centers, and stronger partnerships among hospitals, hospices and community organizations. Collaborative efforts in the Bay Area are already piloting shared funding and training models to make the care more sustainable.
Families’ experiences: small freedoms, big impact
Parents describe the difference in immediate terms. For Sarah and Kevin Lockwood, leaving their son in skilled hands meant their first getaway in years: a short trip that freed them from constant vigilance and the constant fear of seizures or choking.
Other families highlight the quieter gains: a mother who slept through a morning for the first time in years; siblings who enjoyed undivided parental attention while a child stayed under watchful care; and young adults who return for one last respite even as they approach the center’s upper age limit.
“It lets us be parents, not just nurses,” one caregiver said, echoing a sentiment common among those who use the service.
Policy and scaling: the road ahead
Leaders building similar programs emphasize that philanthropy alone cannot sustain a nationwide network. To move from isolated homes to a scalable system, advocates want states and federal payers to recognize these centers as part of pediatric continuum-of-care and to create reimbursement structures that reflect both medical and psychosocial services.
Those efforts are already underway: licensing pilots, legislative conversations in multiple states, and a push to include pediatric respite and palliative services in broader healthcare planning. If those changes advance, families who now travel or wait years for a spot could see more local options.
The stakes are practical and emotional. For families caring for children with chronic, progressive or terminal illnesses, the difference between having a trusted place to turn and having no option at all can be profound.
Back in San Leandro, after Daniel was settled and his nurses had him comfortable, his parents left for a brief anniversary trip — a small, ordinary milestone that felt enormous. For families like the Lockwoods, that breathing room is the core promise of a model advocates want to expand: the chance to live, and to grieve, with support.
