Barbara Swoyer She/Her
Board Certified Patient Advocate, Healthcare, Educational and Disability Support
Why families come to me
Board Certified Patient Advocate (BCPA) with 29 years of lived experience navigating complex healthcare, educational, and disability support systems. Combines extensive firsthand knowledge of complex care navigation and coordination with volunteer advocacy, stakeholder engagement, and project-based work. Brings a deeply informed patient and family perspective to care delivery, resource development, and systems improvement.
Lived experienceNearly three decades of lived experience as a full-time parent caregiver for a child with complex medical needs related to a rare disease, navigating healthcare systems and coordinating care across large, multidisciplinary teams of specialists and providers. Experience also includes pediatric-to-adult transition; coordination of home-based clinical care; 19 years managing self-directed home-based support services; management of medications, medical supplies, equipment, and resources essential to complex home care; navigating insurance benefits and appeals; and experience with palliative care and hospice.
What I help with
Credentials and training
- Board Certified Patient Advocate (BCPA)
- Lived experience as a parent / caregiver
SupportNow reviewed documentation for these credentials.
Where I work
Anyone in the MetroWest Boston area
Fees and availability
Paid. $75/hour
Track record
Current Projects: working with an elementary school aged child with a disability on navigating public school and transition to out of district placement. Also working with several organizations on transition to adulthood and transition points along the entire life of a child with complex medical needs. Several years experience as a Special Ed Surrogate Parent working with DCF children. 29 years experience navigating home care for the medically complex, rare disease population from a medical, educational and caregiving standpoint. Familiar with early intervention, in district and out of district placement, collaboratives, home care staffing including nursing and PCA, transition to adulthood, guardianship and gov't benefits, self directed programming through DDS, also remote sourcing of care for elderly individuals in need of care coordination. Most training is through lived experience of caring for a child with rare disease, as a full time parent/caregiver of 29 years from birth to end of life, but I am also a board certified patient advocate. Familiar with pediatric and adult palliative care and hospice and end of life experience.
